Defying Gravity

All I Can Do is Cry

2012-02-13T22:02:00.000-08:00

Lately I have been at a loss for words. This past week has been better health wise but more emotionally draining than I could have ever imagined. Last SuperBowl Sunday started out with some bad news: my great aunt passed away at the age of 89. She lived a long and happy life and up until the last years her wits were all in tact. Her name was Betty but as kids we fondly referred to her as Betty Boop and she proudly embraced the nickname. Although her passing did not come as a huge shock, it still filled me with a stinging sadness. My mom and I managed to go out shopping for a little bit in her honor. Betty was a shopaholic and a half. I knew she wouldn't want everyone to be moping around upon the news of her death so I figured it would be best to get out of the house for a bit and try to remember the good times.

When we returned home a few hours later, I checked my email and my Facebook account and clicked on a link to a breaking news story that left me screaming in horror. Josh Powell, husband of missing person Susan Powell, blew up himself and his two young sons that Sunday afternoon. I remember feeling the same way I felt on 9/11: for a split second thinking it was an accident but then all too soon realizing that it wasn't. This disturbed man had deliberately murdered his own sweet and innocent children. This story hit particularly close to home because I am friends with a family friend of theirs and have been rooting for the two little boys ever since their mother's disappearance two years ago. It was a shocking, heartbreaking day. Our whole community is still grieving the loss of these two little boys and will be for quite some time to come.

Maybe it was all the emotional stress, the fact that I can never seem to shut my brain off after traumatic events, or the fact that I don't seem to sleep much during stressful times, but my emotions seemed to manifest themselves physically this week. I passed out in the shower for the first time. I don't normally pass out. I can usually tell when I'm getting close and sit or lay my butt down before it happens. I felt very lightheaded and disoriented in the shower and attempted to get out but then found myself waking up on the shower floor with the warm water running over me. I also managed to break my plastic shower chair in two on the way down so I imagine I didn't fall too gracefully. I have been a bit sore ever since and I assume it also had something to do with the heat of the shower.

I did not go to the doctor immediately afterwards but I did schedule an appointment with my electrophysiologist (the soonest I could get in is March 1st) to report my passing out to him and to obtain the results of a yearly echocardiogram that I am going in for later this week. My last echo was done in 2008 and the geneticist who diagnosed my EDS recommended that all EDS patients go in for an echocardiogram at least every other year as a preventative measure to detect any structural cardiac abnormalities.

Tomorrow I have an interview with an SSI representative to determine whether or not I am eligible for any benefits. My lawyer informed me that my hearing for disability is another 9 months to a year away so that I should take the SSI interview for now and cross my fingers that it goes through. I have a very small retirement account from my old employer that may render me ineligible for benefits at the moment. And quite frankly, I resent having to "spend up" my hard-earned retirement earnings at a 50% loss simply to obtain the benefits I have previously earned by working. Either way I hope to have more information tomorrow and I'm really hoping that there is some positive news around the corner.

On a brighter note, I'm finally ready to resume Dr. Levine's exercise protocol for POTS and have a hunch that my results will be promising since my symptoms have responded positively to exercise in the past. My laparoscopic appendectomy scars are barely noticeable anymore, in fact they're almost gone! My skin healed very nicely after the surgery and I am pleased that I didn't experience any major complications in the healing process. The surgeon has cleared me to start exercising again at any time! I am glad that nasty old appendix is outta me and extremely thankful that I made it through both the surgery and the recovery successfully!

Let's see...what else have I been up to lately? Still working part time from home although it's a challenge some days I feel like I am finally making some positive progress at work. In my spare time I have been catching up on a lot of shows: Pit Boss, Dance Moms, Teen Mom 2, Revenge, America's Supernanny, Hoarders, Intervention, even a new one called Mud Cats. It's like TLC's Hillbilly HandFishin' but better! There are still a handful of other shows, new and old, that I also intend to catch up on in the near future. I figure vegging out in front of the television will be a nice way to recover from the rigorous exercise my body is about to endure.

I am also hoping that the exercise regime will serve to distract me from my own emotions right now. I have a really hard time trying to wrap my head around the concept of death and the finality of it all. I really need to pour myself into something so that I don't have so much time to think about all the injustices and cruelties in the world. If anything positive came out of this week it is the fact that I appreciate my own family more. My two little cousins are the same age as the two boys that were murdered. Their family will no longer get to play with them or delight in their youthful energy. Although my cousins are rambunctious and have extreme behavioral problems at times, this weekend I found myself able to overlook that and just be thankful for their presence.

Here I sit somberly on the eve of Valentine's Day and I can't help but think that Heaven gained some good ones this week. My great aunt Betty, the young Powell boys and the inimitable Whitney Houston. These losses leave me deeply saddened and I have spent a disproportionate amount of this past week with tears in my eyes. The following song says it all.

I HATE Hospitals!!!

2012-01-24T23:26:00.000-08:00

These past few weeks I have spent enough time in the hospital to last a lifetime! I suppose it was necessary to be admitted for a few days when my appendix was removed but I would have really liked to have avoided these last two ER trips. One for strange intense back pain linked to a bladder/kidney infection, one for nausea, vomiting and constipation which happened last night. Upon arriving the triage nurse casually informed me that they had "just lost number two" so I would be getting a room soon. Lovely. From what I gathered from my nurses later she was an old lady who they didn't get a chance to implant a new pacemaker in before she passed on. And I had the privilege of getting sent to the same ER room she passed away in minutes earlier. Something about that just doesn't seem ethical and it certainly gave me the heebie jeebies.

It's not just that I hate hospitals and everything about them. It's the fact that the ER docs always insist on taking more and more blood and repeating the same labs they did a few days prior. Of course they always come back looking pretty good with the exception of slightly low potassium which I can only assume is the result of my excessive water drinking. I also hate how they tell me everything looks good except I'm just a little dehydrated. How on earth, is it humanely possible to be dehydrated when one drinks as much water as I do? I drink more water on a daily basis (and juice, milk, v-8, soy/rice/coconut milk,) than everyone I know does combined. I also NEVER drink coffee or anything caffeinated and yet the doctors and nurses never fail to ask if I drink a lot of coffee because of my high heart rate. The answer is always NO! I never drink coffee and have not even had a sip of it in the past five years. It would be really nice if they started reading my chart. NO I do not do drugs and never have. NO I do not even take any prescription drugs after surgery because I have a high pain tolerance. All I ever take is tylenol. Because that's about the only thing I'm not allergic to.

I am the type of person who has always avoided shows like 'ER,' 'House' and 'Grey's Anatomy' because they are anxiety producing for me. So to have to go to the hospital this much over the past few weeks has been draining not only physically but emotionally. I think I definitely suffer from white-coat syndrome. There's probably no remedy for that except to avoid doctors. Which is what I plan to do now for as long as possible. Wish me luck!

Emergency Surgery!

2012-01-14T14:07:00.000-08:00

A few nights ago, one of my biggest fears came true: that I would have to have surgery. After I had my wisdom teeth pulled in '07 and fell sick with POTS, I hoped to never go through another surgery, especially not an emergency one! My stomach has been bothering me big time since a few weeks before Christmas but I figured it was just from finishing up a round of antibiotics for a sinus infection mid-December. The doctor agreed that the antibiotics had simply gotten rid of all the good bacteria in my gut and put me on prilosec and probiotics (neither of which seemed to help at all).

After about a month of eating mild foods and still feeling awful, Thursday morning it got to the point where I couldn't eat or drink anything so I went to Urgent Care where the doctor poked around my stomach and sent me to the hospital for a CT scan of my appendix. The ER doc however, was skeptical of my appendix and thought it might be my gallbladder instead so they did a bunch of bloodwork, an ultrasound of my insides, then an x-ray, and last but not least the CT scan which revealed the problem: my appendix was inflamed and had a stone called a fecolith inside of it.

This actually came as quite a surprise to me because after 7 hours of tests and no food and drink in the ER, a nurse, (the same nurse who told me I had anxiety this summer after my blood pressure was 190/130 from the birth control pill) came in and told me that all my tests looked great but my heart rate was a little high so the doctor would probably come in to talk to me about possible anxiety (she obviously doesn't have a clue about what dysautonomia is!) So boy was I surprised when the doctor came in ten minutes later and told me that he was very concerned about my CT scan and that they needed to operate on my appendix that night and the surgeon would be arriving shortly. My first question was, "Are you kidding? The nurse just told me it was just anxiety!" And then I promptly started crying like a baby and confessed that I was so afraid of surgery because I had been sick ever since having my wisdom teeth pulled.

They did a bit more bloodwork and then whisked me off to meet with my surgeon who seemed very caring and competent. He knew a bit about EDS and realized that he would have to take extra precautions and that the incisions might not heal as quickly as they would in a typical patient. He and the anesthesiologist also asked about my autonomic dysfunction before the procedure. The anesthesiologist joked that she was more nervous than I was so maybe she should knock herself out instead! When I woke up in the OR my abdomen ached a bit but it was my throat that was really burning from the breathing tube they had inserted during the surgery and I was coughing and coughing. Apparently the anesthesiologist didn't give me very much of the drug that dries up secretions because it would have also elevated my heart rate so I was left with a lot of extra phlegm. They gave me three shots of fentanyl before taking me up to my room. Once I got into my bed I felt a little better until I threw up clear liquid all over everyone and all over myself. But my stomach felt way better after that!

My nurses were all very nice and caring and the first nurse I had was especially nice. I received a ton of IV fluids before and after the procedure and a few shots of morphine which didn't help very much and made me feel terrible. The morphine made me hot all over and made my shoulders and joints ache so I didn't take any more of it. I had one vicodin after that and it made me sleepy but didn't take away the pain either. I slept less than an hour total in the hospital after my surgery because of the pain.

Since I've been home I've slept a total of twelve hours though! My body had to catch up on its sleep deficit I guess. I have taken two tylenol since I've been home and think I will be able to get by with the pain okay on just the tylenol. They joked around in the hospital that I must have a pretty high pain tolerance to put up with appendicitis for that long before coming in.

I counted up all the different drugs they gave me in the ER, OR and in my room and added up a total of 12 that I know of. I am a person who hardly takes any pills because I am either allergic to or sensitive to just about everything. Here is the list of things they gave me and their purposes:

-IV Saline for dehyration
-IV Potassium for low blood potassium levels
-IV Protronics for upset stomach
-Oral GI cocktail for upset stomach
-IV Contrast Dye to see appendix in CT Scan
-IV Flagyl antibiotic as a pre-surgery precaution
-IV Fentanyl for immediate post-surgery pain
-IV Morphine for pain during and after surgery
-IV Anxiety right before getting wheeled into OR
-IV drug to dry up secretions before surgery
-General Anesthesia
-Oral Vicodin for pain

So far that's all I am aware of them giving me. I may have received more drugs during surgery that I wasn't aware of but when I get my medical records back for this I will find out.

I am so glad to be back home again. They warned me that the recovery may be slow and painful and to try my best to keep hydrated and keep eating, breathe deep and walk around a little every now and then to keep from getting things like pneumonia during recovery.

They performed the surgery laproscopically so I have three small incisions in my abdomen and they did not use stitches or staples but rather dermabond glue and I am expected to heal normally. I had some bruising the second day but he said that was normal. My abdomen really only hurts badly if I move around or walk. I am supposed to hold a pillow against it for now.

I am really not thrilled that I had to have surgery but I am very lucky that it hadn't ruptured yet or things would be much worse right now. I am lucky that my surgical team was fairly competent and didn't dismiss my existing health issues, in fact they seemed to take them very seriously. I am lucky I had a support system there to help me through it and a nice team of nurses. And I am certainly glad I listened to my body and went to the doctor when I did! For over a month I tried to tough it out at home but doing that any longer would have been a big mistake!

As I go through the recovery process, I hope to get stronger and stronger. What are your experiences with surgery and recovery? How long did it take you to recover? If you have any tips or advice to share it would be much appreciated!

The Dorothy Shoe Project!

2012-01-11T23:45:00.000-08:00

Michelle over at Living with Bob came up with a truly brilliant idea: to share her sparkly shoes with the world. Specifically, to share her signature shoes among those of us living with chronic invisible illnesses like dysautonomia. Whether you live in Denmark, Dubai, or anywhere in between, the coveted Dorothy shoes may make their way to your doorstep. If you're interested in participating, simply send a brief email with your name and your country to Rusty.Hoe@thedorothyshoeproject.com.

Can't walk in heels? Can't walk at all? Not a problem. Everyone is entitled to take their turn wearing the shoes. The only stipulation is that you photograph yourself (or your feet!) wearing them in a creative way and share online. Not only will The Dorothy Shoe Project infuse a bit of fun and whimsy into our lives, it is also a beautiful display of solidarity and a unique and I'll bet effective way to spread awareness. Wear them to your doctor's appointment, to the gym, the grocery store, any public place where people may inquire about your ruby heels and what they represent.

Michelle is already one of the coolest women in the world and her latest creation, The Dorothy Shoe Project, pretty much crowns her as Superwoman to those of us in the chronic invisible illness community. So Michelle, this song's for you and all you do. Your blog has already been a life-changer for so many of us and now you're about to change even more lives with The Dorothy Shoe Project. Can't wait to put some new shoes on and pass them along!

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

2012-01-07T16:33:00.000-08:00

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

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

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

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

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

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

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

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

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

Bygones!

2011-12-30T16:55:00.000-08:00

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

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

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

Nutrition and Chronic Illness

2011-12-20T22:49:00.000-08:00

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

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

Nutrition and Chronic Illness

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

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

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

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

Bah Humbug!

2011-12-17T20:24:00.000-08:00

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

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

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

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

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

Gift Ideas for POTS/EDS Patients

2011-12-05T17:03:00.000-08:00

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

Splurges:

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

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

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

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

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

Steals:

1) Hot Water Bottle $10

2) Homedics Mini Massager $10

3) Omni Mini Massage Roller $10

4) Omron Heart Rate Monitor $35

5) Plantronics Cordless Phone Headset $10

Things To Be Thankful For

2011-11-27T21:50:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

Did Brittany Murphy Really Have Dysautonomia?

2011-11-21T23:21:00.000-08:00

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

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

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

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

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

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

2011-11-15T14:15:00.000-08:00

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

RE: Postural Orthostatic Tachycardia Syndrome (POTS)

To Whom It May Concern:

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

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

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

Intermittent absences from work and school are common.

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

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

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

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

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

Violent Vertigo!

2011-11-13T23:48:00.000-08:00

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

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

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

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

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

On the Lighter Side of Life...

2011-11-09T01:43:00.000-08:00

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

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

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

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

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

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

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

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

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

Our Lady Peace - Somewhere Out There - C by Elemiste

Does New Diagnosis Explain Everything?

2011-10-28T23:37:00.001-07:00

Warning: This is going to be my own personal blogtherapy session. Meaning I need to get everything off of my chest and the racing thoughts out of my head tonight so I can get some damn sleep. A big thanks to Rusty Hoe over at Living with Bob for reminding me just how therapeutic blogging can be, especially during life's toughest moments.

Yesterday's trip to the geneticist was an interesting experience. I saw a geneticist and a genetic counselor at a nearby children's hospital where they primarily deal with children and mothers-to-be. Originally my appointment was scheduled for April of 2012 but there was a cancellation yesterday so they called me two days beforehand to see if I would be available to come in early. I was hoping to get in sometime before next year of course but I had no idea it would be so soon so didn't have much time to mentally prepare myself. Just hours before the appointment I contemplated cancelling it completely. Wasn't sure I was ready to know yet or if I ever wanted to know for that matter.

I already know that I have postural orthostatic tachycardia syndrome and temporomandibular joint disorder which are both incredibly tough to manage on a daily basis, along with a few other minor medical conditions like gastroesophageal reflux and sinusitis which I can deal with. I did not particularly want another hard-to-pronounce diagnosis to add to the list. And ehlers-danlos syndrome, EDS for short, is a difficult one to say the least. It is an inherited condition that effects the collagen production in the connective tissues of the body, which of course, are located all over the body. It primarily effects the joints and skin, however it can also effect the eyes, heart, gums--basically anywhere that connective tissues reside. As you already know or can imagine, having a condition like this can impact nearly every part of the body and often explain the unexplainable. EDS predisposes people to both autonomic dysfunction and joint instability. In other words, both POTS and TMJ are merely manifestations of defective connective tissue.

To quote my friend Claudia's analogy, the glue holding normal people together has the strength of concrete while the glue holding an EDS patient's body together has the strength of bubblegum. Now, on the bright side, people with EDS are very flexible and have soft skin. On the downside, it can be a physically disabling condition and depending on which subtype of EDS is involved, can also be life-threatening.

So, do I have EDS? Well unfortunately the answer is yes. The geneticist took a thorough medical and family history and then conducted the physical exam. This woman was very thorough, measuring the circumference of my head and the length of my fingers. She even measured my ears. She also checked the uvula in the back of my throat to see if I had one or two. She was pleased to find that I only had one. I scored a 6 out of 9 on the Beighton Scale. The minimum for diagnosis is a 5 out of 9 so I am hoping that a 6 means I have a mild case. I have Type III or the hypermobility type which is generally thought to be the least severe. She examined the skin on my arms, face, abdomen and shins and determined that it was soft but that I was not subject to abnormal scarring or excessive bruising as found in many of the classical and vascular cases. They were both very confident in their diagnosis which reassured me, at least to a degree, that EDS is to blame for everything that has happened to my health the past four years.

I left the geneticist's office yesterday with a 30-page stack of literature regarding the condition. They gave me this document from NIH which is thought to be the current gold standard in guides to management. They also printed off some helpful info from The Ehlers-Danlos National Foundation. Both the genetic counselor and the geneticist both seemed to know their stuff and assured me that although this is not extremely common, it is certainly not uncommon and that there are thousands and thousands of people living with EDS in the United States alone. It is estimated the 40% of people in the country of Chile have some form of EDS.

In a way, I am relieved to have the diagnosis part over and done with. I think my gigantic health mystery has been solved. The missing puzzle piece has fit into place. I still don't understand why my joints have never given me any trouble in the past until I turned 22 and why all of a sudden after that fateful wisdom teeth surgery I fell instantly ill with both POTS and TMJ. I still wish I could turn back time and never had had that surgery. I am convinced that I would still be healthy today if I hadn't had that surgery, with or without an EDS diagnosis. To be perfectly honest, if I didn't have POTS, I probably would have never known I had EDS.

Growing up, being flexible never posed any problems for me. I never sustained any injuries and I never suffered any aches and pains. In fact hypermobility probably offered me a bit of an advantage in the ballet world. My teacher always said I had perfect turn-out. And it was pretty effortless. However I can't help but look back and wonder how many of the girls I danced ballet with may also have EDS considering some of them were even more naturally flexible than I was. Back when I was a kid before the Internet had taken off, I think it was really a matter of lack of awareness that any conditions like this even existed. Access to information has improved considerably since then so now people are able to Google any medical condition under the sun and get instantly connected to online communities, resources and services pertaining to any given condition.

Part of me wants to contact Lifetime TV's Dance Moms and tell them to get their kids checked for EDS. I believe this condition is prevalent in the dance world and perhaps it's not good to encourage joint hyperextension at an early age, if at all for people with connective tissue disorders. Don't get me wrong, I love ballet. Probably in large part because it came naturally for me. I wouldn't want any of the girls on Dance Moms to quit doing what they love (I am a huge fan of the show!) but just for them to have the opportunity to be aware at an early age so they can take precautions in case any of them do have EDS or something like it.

Because I am still new to all of this, I definitely have a lot to learn. Any guidance is much appreciated. I do have a few questions for those of you who have been in my shoes before. I plan on starting off slow with a few sessions of physical therapy that I can replicate at home. Which activities best stabilize joints or strengthen the surrounding muscles safely with minimal risk of injury? Are there any specific exercises you would recommend for hypermobile knees, elbows and shoulders? Have you tried any methods of natural pain relief that have been effective?

I read in the NIH document that 1 in 20,000 people have the hypermobility type of EDS. However estimates are as high as 1 in every 5,000 people. Rest assured, fellow zebras, when people tell us we are a one of a kind, it is true! Which brings me to my last and perhaps most lighthearted question: why is the EDS mascot the zebra? It is a lovely animal, I just don't understand the significance. Does anyone know the history behind it? I'd be interested to hear it!

The Missing Puzzle Piece?

2011-10-26T19:39:00.000-07:00

When I first fell ill with mysterious symptoms over four years ago, I had never even heard the terms "tachycardia," "POTS" or "Ehlers-Danlos Syndrome." It would have all sounded like a foreign language to me. Soon after my POTS diagnosis I learned that many of my fellow POTS friends also suffered from another mysterious illness called EDS. It sounded awful to me but I wasn't the slightest bit worried that I may have it since no doctor had ever mentioned it to me before. Many of my EDS friends have also been sick their entire lives and mine hit all of a sudden at 22. Prior to that year I had been perfectly healthy all through childhood, adolescence and even those first few blissful years of early adulthood. Never a broken bone, never a hospital visit, never even contracted chickenpox or pinkeye while they were going around my ballet classes.

Looking back on my childhood, I had a few ear infections, a few bouts of strep throat, and pneumonia when I was about 5 (probably the sickest I had ever been as a kid). None of those common childhood illnesses brought me down for long. My mom would take me to the pediatrician who would prescribe antibiotics and I would always bounce back and be as good as new in a week or two. When I was about 5, I also had a large baker's or popliteal cyst on the back of my knee. The doctor wasn't too concerned and said it would disappear on it's own. It must have popped after I was buried in the sand one afternoon. When I emerged from the sand the large cyst was gone and I hardly remembered having it at all until my mom mentioned it the other day. Turns out baker's cysts are actually a sign of EDS. My pediatrician was not the slightest bit concerned about it at the time.

Fast forward to just after my 22nd birthday and I developed an infection around one of four impacted wisdom teeth, and also, another benign cyst on my jawbone. I had intense pain right around my lower left tooth and jaw and swollen gums. The doctor was certain it was an infection that required antibiotics and that I would need to have my wisdom teeth removed when the infection cleared because there was simply no room for all my large teeth inside my small mouth. For some reason, I had a bad feeling about getting my wisdom teeth pulled and had successfully avoided the procedure during my first year of college because I had come down with a cold during winter break and the oral surgeon said to cancel. Sure I was nervous about the surgery, and secretly glad that I didn't have to have it freshman year, but I had no idea that getting my wisdom teeth pulled for real during senior year would change my life forever--and for the worse.

I would be lying if I said I was okay with being sick, that I have come to completely accept it, or that everything happens for a reason. The fact is, I was angry about it. I am still angry about it. In the whole Stages of Grief thing, I have barely moved past the denial phase but now pretty sure I'm stagnating in a perpetual state of alternating between anger and sadness. The only thing that gives me any solace is knowing that I've met so many wonderful people who understand exactly what I'm going through. However, it also pisses me off greatly to know that all of my amazing POTS/EDS friends are suffering, and many are worse off than I am. They are some of the nicest, smartest, most talented people on the face of the earth and they are sick also. I am not sure why God/the universe/[insert god or goddess of your choice here] would allow so much senseless suffering to happen to such wonderful people. Why do the criminals and convicts who have committed heinous and violent crimes often go on to have perfect physical health? It seems like some sort of cosmic joke to me sometimes. What also bothers me is my healthy peers who abuse their bodies on a daily basis. The ones who smoke a pack a day, drink to get drunk and try all sorts of crazy drugs simply for the "high." If they had to walk around feeling drunk every day of their lives without the chance to ever feel sober would they still drink? I feel like a drunk who can never sober up. That's what being chronically lightheaded, dizzy and nauseous feels like to me. Being drunk. And to be quite honest I'm not even sure I have ever even been that drunk. But the closest I have come to being drunk was after three drinks on a full stomach at 21 years old. I felt so crappy the next day that I vowed to never consume more than one drink in the same day ever again. Drinking has never really fascinated me but especially not now. I have never smoked a single cigarette or tried an illegal drug in my life yet I am still sick nonetheless.

Yesterday I was feeling pretty sorry for myself. I had an appointment with an orthopedist who was very knowledgeable and thorough, and for once, a doctor who was also a very nice and genuine person. He examined nearly every joint in my body and tugged on my skin. He referred to my joints as "loosey goosey" and said that I definitely have hypermobility or joint laxity and that that is probably the reason my joints are popping so much. As he examined my knees my hips popped. He felt my shoulders and elbows pop. Needless to say hearing that I 'definitely' have hypermobile joints was not good news to me. I am not a ballerina anymore and although my hypermobility probably served me well in the past, it is certainly not doing me any good now and probably won't in the future either. I realize that there is a distinct possibility that I do have EDS and will have to learn to live and cope with that in addition to POTS. On the bright side, he did say that my hypermobility is not severe, and prescribed me a few sessions of physical therapy to work on joint stabilization exercises.

Ironically, while I was in the orthopedist's office, the geneticist's office called to inform me that they had had a cancellation for Thursday (tomorrow) and wanted to know if I could come in early (my original appointment was not scheduled until April of 2012!) I knew I had no choice but to jump on the appointment, but at the same time it hit me that maybe I am not quite ready to know if I have EDS yet...I haven't really wrapped my head around the whole thing yet and sometimes ignorance is bliss.

Although having EDS would explain my persistent case of TMJ, my dysautonomia and now my noisy joints, I wish I didn't know the reality that EDS is incurable and often debilitating. However I suppose the responsible thing would be to find out once and for all whether I have it or not and either complete my medical puzzle with the missing piece or (hopefully) rule it out altogether. After getting the orthopedist's take on things, I am trying to mentally prepare myself for a positive diagnosis. Getting a positive diagnosis will also undoubtedly make me question whether or not I want to have biological children. Whether or not it would be fair or ethical to knowingly pass my potentially painful genes onto another human life.

If I do have it, or even if I don't, I need to do whatever I can to try to preserve and stabilize these noisy joints of mine so I at least won't have to worry as much about getting injured. At least the orthopedist said my knees are pretty sturdy. My elbows are another story. My ultimate fear about having EDS is that it could mean my dysautonomia may never go away. That no matter how much I exercise, how well I eat or how much I will myself to get better, I may never be cured and may never experience life as I once knew it ever again. So if I can just move through and beyond these darn stages of grief I will have to adopt a new worldview, a new approach to life perhaps. If there is a possibility that any of my conditions will be progressive or degenerative, I had better quit waiting around to get better and start living while I still can.

Help Rachel Breathe Merchandise

2011-10-19T18:11:00.000-07:00

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

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

29 Days of Giving in Honor of Alexa Simmons

2011-10-12T01:16:00.000-07:00

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

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

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

My Medical Records: Fact or Fiction?

2011-10-11T02:57:00.000-07:00

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

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

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

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

Updates and Downtime

2011-09-25T00:53:00.000-07:00

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

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

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

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

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

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

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

Give Your Body A Boost!

2011-09-17T23:44:00.000-07:00

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

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

Inspirational Art by EDS Patient Michaela Oteri

2011-09-15T19:48:00.001-07:00

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

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

2011-09-13T21:13:00.001-07:00

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

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

2011-08-30T18:05:00.000-07:00

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'

2011-08-11T18:19:00.001-07:00

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

2011-07-28T22:27:00.000-07:00

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?

2011-07-14T17:42:00.000-07:00

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

2011-06-23T16:28:00.000-07:00

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

2011-06-14T20:47:00.000-07:00

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.'

2011-06-09T17:58:00.000-07:00

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.

Should It Really Be This Hard to Get the Social Security Disability Benefits You Deserve?

2011-06-09T16:23:00.000-07:00

Celebrate 'Day of Visibility' for Invisible Illnesses

2011-06-05T14:43:00.000-07:00

Nefarious Nightmares!!!

2011-06-03T23:55:00.000-07:00

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?

Grad School?

2011-05-29T22:16:00.000-07:00

Okay, so although I am fortunate enough to have finished my undergrad degrees on-time and debt-free through earning scholarships, I am finding that my bachelor's degrees are fairly worthless in this economy, and even more worthless when my health limits me (no standing or sitting upright for long periods). So after several unsuccessful attempts to obtain a new and stable telecommute position, I have been doing a lot of soul searching. Communications is a very unstable field right now. Especially when you have a background in television and public relations (ultra-competitive, low-pay, first department to get cut in most companies, etc.) Throw my unstable health into the mix and it's pretty much a recipe for disaster. Although I believe I briefly obtained self-actualization as a talk-show host, I simply can't compete in that industry anymore. Not to mention I am now back to trying to meet my lowest level needs on Maslow's Hierarchy. I loved my job, but why did I love it so much? Not just because I let it define me (not a healthy thing to do) but more importantly because I was reaching people, providing information, helping them. And I was able to reach a fairly large audience even on local television. It was like the ultimate validation for a stranger to approach me in the grocery store and tell me they loved my latest show. But now if someone approaches me in a grocery store it is probably because I have dropped my keys on the ground or look as lost and disoriented as I feel.

At the end of the day, I still want to help people, somehow, someway. May sound crazy I realize, since most days I can barely help myself. But lately I have been contemplating going to grad school online to pursue a master's degree in counseling. It would be a two-year online program that would include 2 or 3 in person residencies and at least one 100-hour practicum and a recommended internship working with patients in a clinical or office environment. The catch is I'm not too confident about taking out the large loans it will take to finance this educational endeavor. With dysautonomia, nearly every big decision we make is a gamble. Especially the ones that require this level of long-term planning.

In a perfect world, I would be able to earn my master's degree and continue to work on my health with the hope that it will improve over the next two years so I can start a fulfilling career where I get to help people again (while sitting down of course). Maybe even get to help others suffering from chronic illnesses. I know several therapists who only work about 20 hours per week and still make a full-time salary because they are paid well and it is an in-demand profession right now. However, the risk I run by getting another degree is that it will become yet another useless piece of paper if my health deteriorates any further because then I will not be able to work at all. And not be able to repay the exorbitant student loan rates either. In a nutshell, I'm scared. Too scared to make such a huge and life-altering decision on my own. To tell you the truth I am never sure if I should be applying for disability or graduate school. Seems like I am semi-coherent every other day and those are my "good days." On those days, I tell myself I can do anything if I put my mind to it. But then reality sets in the next day when I can't get out of bed again. And this cycle continues to repeat with randomly striking symptoms. I do my best to avoid my triggers (standing, heat, caffeine, etc) but even then, symptoms seem to strike at random. Of course as we all know all too well this unpredictability is not really conducive to having any sort of "normal" life, so I have been trying to find ways to adapt whether it is changing my profession or changing my outlook.

It seems like this whole blog post reads like a convoluted pros and cons list. I realize that this whole grad school thing is ultimately up to me, but does anyone want to weigh in on the issue? Feels like a major gamble but I guess there is little reward without the risk. To those of you who have pursued or are currently pursuing higher education, is it worth it with chronic illness? Do you regret getting a degree or was it worth every penny? And perhaps most importantly, how have your lenders treated you when it comes to repaying those pesky student loans? I welcome your perspectives. And if you have any ideas of other things I can do with my existing communications degree, please let me know, I am open to any and all suggestions!

New Daily Persistent Headache Syndrome

2011-05-24T17:49:00.000-07:00

Yesterday I saw the headache neurologist I have been waiting patiently in pain for over two months to see. He gave me about 15 minutes of his time, asked me a set of very cut and dried questions and cut off most of my answers before I could finish a complete sentence. Luckily my mom was with me and was able to tactfully yet forcefully interrupt him by saying "can I ask you a question?" and got a few questions answered that way. I know a lot of doctors suffer from what I will term "no bedside-manner syndrome" but this guy takes the cake. He was completely deficient in people skills. I was completely unsatisfied with my appointment I had waited so long for. And even more disappointed that my follow-up appointment is another seven weeks away. He wants me to chart my headache pain level on a scale of 1-4 (4 being debilitating pain) until my next appointment and then he will decide what medication to try me on. Gee, sure would have been nice if the office gal would have asked me to chart my symptoms over two months ago when I made my appointment and I would have had plenty of "data" for him and would not have to suffer for another 7 weeks without any medicine to offer relief.

I left his office feeling a little defeated and also feeling like this guy didn't even let me tell him half my symptoms. He told me to go home and google new daily persistent headache syndrome, he said he is almost positive I have that, but wanted me to read up on it and let him know if my symptoms matched or not or if I disagreed with his diagnosis. Which I absolutely do. Not only are the daily persistent headaches characterized by "mild to moderate bilateral pain" (hello, mild to moderate pain doesn't even phase me, but the intense pain that literally gives me goosebumps and produces muscle knots the size of ping pong balls behind my temples certainly does) they are also not known to have a specific cause. I can pinpoint the day the headaches started and a triggering event. I'm sure it's no coincidence that I've had horrible headaches centered around my jaws since September of '07 after that fateful impacted wisdom teeth extraction when the oral surgeon informed me that I would probably end up with a bad case of TMJ after the surgery (my car accident 3 weeks later didn't help either). Of course, the surgeon neglected to inform me I would end up with dysautonomia, but who could have ever predicted that. It gives me the shudders whenever a friend or relative says they are going to get their wisdom teeth pulled. I wish I would have never, ever had mine out as I blame both my TMJ and POTS on that stupid surgery. I went in young and healthy, and came out a few hours later in the body of an 82-year old woman.

Unfortunately I think yesterday was a waste of an appointment. A bullshit diagnosis that my pre-med friends in college could have more accurately diagnosed. And even more unfortunately for me, that leaves me back with the same old TMJ diagnosis which is not only a very stubborn pain that's hard to knock out, it's also a condition most medical insurance companies will not cover at all. Most dental insurance companies will cover a little bit, typically $500 a year with a $5000 lifetime maximum. Which is hardly enough to cover the cost of one nightguard let alone more effective but costly treatments like botox or even surgery.

I am sure new daily persistent headache syndrome is a very real condition with very real sufferers. I just don't think I am one of them. I would be willing to bet money that that's one condition I don't even have. It almost seems futile to go to most doctors anymore when my POTS friends are so much smarter and offer better advice. I'm talking to you here, Claudia. Thanks to all my friends in the dysautonomia community for being both smart and supportive. Too bad all of us aren't doctors, we'd be a heck of a lot better at it than the ones practicing now.

Delayed Sleep Phase Syndrome and Dysautonomia

2011-05-16T20:32:00.000-07:00

Once upon a time when I was a wee toddler, I loved to stay up late and watch the Johnny Carson show. For those of you not old enough to remember, he was NBC's late night host prior to Jay Leno. I am told that sometimes I would be wide awake in my crib late at night. I have always been a nightowl. Which isn't necessarily a bad thing, just a part of who I am. My creative energy always seems to flow at night, and it is usually the time of day when I am most alert. Which worked to my advantage when I had to finish up all those homework assignments I procrastinated on or had an extracurricular deadline approaching that I didn't have enough daylight hours to devote to.

Things have been this way my whole life. I would feel alive and energetic at sleepovers when most of the other girls were starting to yawn. I would be a bear in the morning waking up for school and some of my most embarrassing moments happened when houseguests would overhear the absurd profanities I would yell in the morning for no particular reason, simply because it was morning and I always longed for more sleep. I seem to get the most refreshing, restorative sleep in the mornings or even into early afternoon if I happen to fall back asleep. This is the time of day my body likes to sleep. I fondly remember sleeping in through first and second period in high school and arriving late on some mornings. Thankfully this wasn't a problem for most of my teachers because I already held a 4.0 and academics were a breeze for me as I was not quite challenged enough at my small rural high school that only offered two advanced placement classes. In college, I scheduled my classes exclusively for afternoons and this schedule suited me to a tee. Sometimes being a nightowl got me in trouble with my mother or my first period teacher, but more often than not it never interfered with my life.

Since falling ill over three years ago however, I learned the true meaning of the word insomnia. I went for a period of four days without a wink of sleep, and shortly thereafter saw a sleep specialist and was prescribed several different sleep meds. The only one that worked was old fashioned ambien. And by worked I mean it would take me about two hours to fall asleep and I would sleep for about three or four hours a night. Which at the time, I was very thankful for. Just the fact that I was able to sleep at all was a miracle to me. During my waking hours, I experienced chronic resting tachycardia, shortness of breath, and sweaty palms all before receiving the POTS diagnosis.

My symptoms have improved tremendously since the beginning, but the ones I seem to be persistently left with are trouble sleeping and wooziness/lightheadedness. On rare occasion I sleep fairly well, and the following day my woozy spells are typically less frequent, less intense, and I am generally able to better cope with my symptoms when I have actually slept the night before. I am sure a lot of you can identify and empathize with my plight. It seems like a lot of us suffer from similar sleeping problems.

I have a pretty good sleep hygiene routine in place now, as I have a bedtime ritual that relaxes me and that my mind associates with sleep. I will take a warm shower, sometimes an epsom salt soak on my feet, put on my eye mask, arrange my pillows and try to get comfortable for slumber. Problem is, I usually struggle to fall asleep before about 3 am every night. It doesn't matter if I perform my bedtime routine at 10 pm or 2 am. I find that the later I get ready for bed, the faster I fall asleep. In order to be alert and functional the next day, I need to sleep until about 11 am or noon the next day. Not so great in a society where business operates on a 9-5 schedule. I have tried many times to change my natural schedule. Bright light therapy, chronotherapy, going to bed at different times to reset my body's circadian rhythm...nothing has worked. I always seem to revert back to the 3 am bedtime. It is so frustrating to try to fight it simply because that's society's expectation and the perception is that you're either lazy or undisciplined if you're not a morning person.

I have only seen a sleep doctor once and that was over 2 years ago. I opted out of the sleep study. My sleep specialist diagnosed me with both initiation and maintenance insomnia. However now I think I have something more like Delayed Sleep Phase Syndrome, where my body's internal clock is simply off, as is the rest of my body due to dysautonomia. When I sleep a 3 am to 11 am schedule, some days I feel okay, dare I say, almost normal. Sure I still have to deal with some pesky POTS symptoms, but at least sufficient sleep helps me cope with them better.

I avoid early morning appointments like the plague and as far as employment I will not be taking any jobs that start at 8 or 9 am. Recently though, my sleep patterns have come under close scrutiny by family members who tell me I just need to wake up early everyday, tough it out and I will eventually start falling asleep at a normal time. Been there, tried that. Didn't work and I felt miserable 24/7 from chronic sleep deprivation. I am sick and tired of having to try to change my imperfect internal clock to suit the sensibilities of others. So what if I'm an extreme nightowl? My body seems to function better when I don't fight it. When dealing with a chronic illness, I say, whatever works, just go with it. The people criticizing your "abnormal" schedule don't have to live in your body. Chances are they are among the annoyingly perky morning people anyway and can't even begin to empathize with your experience.

DINET Needs Our Help!!!

2011-05-05T16:45:00.000-07:00

If you haven't done so already, please read the Spring 2011 edition of DINET's quarterly newsletter. I have been a newsletter contributor since last year when they were seeking volunteer writers. Now, however, DINET (Dysautonomia Information Network) is seeking a new president in order to keep the organization afloat. I know so many brave, strong, articulate and amazing individuals who would be perfect for this position. Please do not be intimidated by the title, people of all backgrounds and experience levels are encouraged to apply. If you have any experience with dysautonomia and any interest in being a leader for DINET, I would strongly encourage you to apply. It is an honorary volunteer position and current president Michelle Sawicki has simply reached a point where she has too little time and energy to devote to the organization.

This is a wonderful organization and an important resource for all of us to refer doctors, friends and family to in order to help them gain understanding and awareness of this debilitating and complicated condition. In fact, DINET.org was the trusted website my electrophysiologist referred me to upon my diagnosis. Let's each do our part to keep it up and running.

Perfect Exercise Equipment for POTS

2011-05-04T23:46:00.000-07:00

Although the Luxury Hypoxi L250 is touted as a cellulite-burning machine, something tells me it would also be the perfect piece of exercise equipment for a potsy to own. Especially if you're not able to tolerate exercise in an upright position it would serve to help stimulate circulation immensely. Of course, one could simply employ the old-fashioned method of lying on your back and riding an invisible bicycle in the air and probably achieve similar circulation-boosting benefits, but this piece of exercise equipment looks much cooler and actually, downright comfy. Even if I can't afford one, I wish my gym would at least get one of these.

http://www.thehypoxistudio.com/L250.htm

Decisions, Decisions

2011-04-15T20:52:00.000-07:00

Although I was already sort of an indecisive person before getting sick, POTS has forced me to really consider every angle of every action, every decision I make very carefully. The most important thing I try to ask myself in making any crucial decision is "what's the worst that could happen?" Well, truth is, when dealing with a chronic illness like POTS, your health or even your life could be on the line if you make an unwise decision like going for a drive or going up on a ladder. It's like my electrophysiologist always says "POTS is not going to kill you unless you pass out while driving a car or climbing a ladder." Basically, POTS necessitates that I lead a careful life. Which I did before anyway, but the whole not driving long distances thing is pretty stifling. Especially when I am in the midst of looking for a new job and already have a few offers on the table. Even though one is a telecommute position, most employers require that you meet them in person in the office before they will hire you. Which poses a significant problem for me when the office is out of the area and I cannot drive very far without having to pull over and put my legs up.

Problem is, explaining a chronic and complicated medical condition to a potential employer will not score you any points. Quite the contrary in fact, it may influence their decision to look for someone else. Nobody wants to hire someone who they perceive as potentially unreliable. Especially if the position is somewhat demanding in terms of hours or performance. What was advertised as a half-time position and a source of supplementary income has now become a position that will consume at least ten hours a day at slave-labor, "sweat equity" independent contractor wages. Not sure if this is something I can rationally take on when it will be harder work than my last job for half the pay, except for the fact that they are offering me an impressive title and I am not working at all right now so something coming in is better than nothing coming in. I am worried about the strain that this job may put on my neck, shoulders and jaw being hunched over the computer for that many hours each day (5 days a week). So not sure I am ready to watch my health decline for a job that will not even pay benefits or into social security or unemployment for me. I guess that is the risk I run. The company is very interested in me. I have already invested ten hours of my own time completing a trial "day's work" for them and have had three phone interviews. Now they want to meet me in person (about an hour and a half drive away) to sign a contract...not sure I am ready to do this.

Meanwhile, a headhunter from a large local corporation contacted me about an 8-month contract position that pays VERY well. Much, much better than the other job and the work is tailor made for my skills and experience in television. The only catch is that travel may be required between the two sites (about 2 hours away from each other). Nowhere in the job description does it say that a valid driver's license is required, but I am assuming they will expect me to drive myself between the two sites which poses a huge problem for me. And with this job I would be going into the office everyday for 8-hour days which is a bit demanding. I would also have to relocate to be close enough to drive myself to work each day.

What to do, what to do. I do not appreciate how POTS has complicated my life. The only things my "normal" twenty-something friends have to take into consideration before accepting a job offer is how much they are getting paid or what benefits will be offered to them. Not whether or not they can physically handle sitting upright in a professional posture (a.k.a. feet off the desk and no lying on the floor with legs in the air) for 8 hours a day and still stay conscious or how to get themselves back and forth to work safely on a daily basis. In all honesty, I am not sure it is fair to any employer for me to even be working at all considering my daily bouts of brainfog and forgetfulness. And it is probably not fair to me to have to sit there trying to look and act professional as all the blood continues to rush away from my brain and I approach passing out. The thing is, I know how hard it is and how long it can take to get on disability and I do not have the luxury of waiting for an income right now. I feel like I have to at least try working again and if something happens to me on the job then so be it. That probably sounds a bit negative, I realize. But I feel like I have to try. I don't have anyone else to rely on but myself right now.

Any suggestions or advice? Which job would you go for? Sign the contract for the low-paying job that is telecommute, but long hours? Or brave going into an office everyday and having to wrangle transportation for the required travel (but for big pay)? Any rational answers are appreciated here. Trying to consider my options carefully once again before making any decisions, but running out of time as I am scheduled to sign the contract for the telecommute position at the end of next week. Help!

Makeup That's Good for You!

2011-03-24T19:24:00.000-07:00

Wearing a bit of makeup can not only help boost your self-image and self esteem, it can, believe it or not, also be at least somewhat healthy for your skin. The last few years I have been a low-to-no-makeup kind of girl, but every now and then the dark circles under my eyes remind me that a little concealer would make me feel a lot better and help erase the signs of my illness from my face. When I worked as a television host in front of cameras and bright, unflattering lights, I was never caught without my makeup on. Now, however, it's a much different story. I am hardly ever caught with makeup on. I had forgotten how much I like wearing it, and enjoy playing around with colors.

Since I like to avoid anything with chemicals and heavy synthetics, I was in search of a makeup with more natural ingredients. Tarte cosmetics make the grade. I purchased Tarte's The Jewelry Box from Sephora this winter and have since enjoyed every single shade of eyeshadow, which applies easily and has a smooth finish. I also like their illuminizer and eyeliners. It is all great quality makeup, and best of all, nothing irritated my skin or eyes, so I can wear it without worrying about developing a case of red eyes or breaking out from the chemicals. My only complaint is that the lip gloss in the set is a bit sticky and I don't care for the lip gloss shades against my pale skin. However, overall this product was a great value, great quality, and reminded me how fun makeup (minus the chemicals) can truly be. The fact that Tarte cosmetics also contain a blend of free-radical fighting super fruits, vitamins, minerals and natural plant extracts is an added bonus.

The Effects of Deconditioning on Dysautonomia

2011-03-10T15:20:00.000-08:00

Any POTS or Dysautonomia patient knows all too well that sometimes we have those days where we can't get out of bed no matter how hard we try or how well hydrated we are. Whether we're experiencing dangerous lightheadedness, syncope, fatigue, or pain, sometimes the bed is our only option. Even when things are going well with our health for an extended period, we may still experience a really bad day here and there. That's the unpredictable nature of POTS for you.

Personally, my symptoms have responded very well to weight-bearing exercise and recumbent cycling. When POTS first struck my senior year of college, I was in the best shape of my adult life. I was taking a strenuous ballet class twice a week, yoga three times a week, and walked all over the place all the time. So to all those misinformed people out there who think that POTS is simply a result of being out of shape, I say they're absolutely wrong. I know many POTS patients were great athletes before they fell ill. At my absolute sickest when I couldn't do much of anything, a well-meaning but stubborn and ignorant relative told me I was just out of shape, and that my "heart condition" would go away if I simply got in shape and exercised everyday. Of course his proposal sounded preposterous to me. I could hardly lift my head off the pillow most days let alone become a fitness guru. And his oversimplified explanation didn't account for why I got sick in the first place when I was in such great shape as an active college student.

Nonetheless, my electrophysiologist also urged me to join a gym even if it meant exercising for just five minutes at a time. Eventually (about a year after my diagnosis) I took his advice and began a careful exercise regime. Although I was doing fewer reps and lifting lighter weights than the senior citizens at the gym, I was feeling better after these brief workouts. I also purchased a recumbent exercise bike for home use and between riding that 3 or 4 times a week in conjunction with the weights at the gym 2 or 3 times a week. Between these two activities I was feeling a lot better and able to accomplish a lot more in a day than I had previously been able to. I also experienced far fewer woozy spells. In fact they were almost gone. However, if I went off track and missed a few days of exercise, the woozy spells returned and I felt potsy again. This tells me that consistent (but not strenuous) exercise is the key to a more normal life, at least for me.

After a few months of getting into a good exercise groove, I started a full-time job that sucked up all my time and energy. My whole day revolved around my job and there was no time left for exercise. Although I enjoyed and needed this job, it had clearly impacted my health in a negative way. Sitting upright at my computer desk all day with my hand glued to the mouse was not doing anything to improve my strength or circulation, in fact, the excessive and prolonged inactivity was diminishing it. The woozy spells were back with a vengeance upon standing, my feet were always icy cold, and I was experiencing sudden and intense bouts of weakness where I couldn't do anything but lay there. It may be a blessing in disguise that I lost my job when the company downsized by 50%. Even though I was telecommuting (about as ideal as it gets for someone with a chronic illness), my body could not handle 40-50 hours a week. I didn't even have that many good hours to spare in a week. Although the layoff came as a total unwelcome surprise to me initially, I am now realizing that I was putting my body through hell just to be working. Of course I do not have the luxury of simply not working to focus on my health (I wish I did) as I need the income, but ideally it will be something that pays better than my last job and it will only be part time (I hope).

Since losing my job I have been in a bit of a funk, mainly because my job was basically my whole life since November up until last week, so I am feeling a bit empty inside. I have been lounging around more than I should be, staying in bed longer to try to get sleep that doesn't come, and feel too tired and sluggish to exercise. Yet I know I need to exercise again because it will give me strength and energy and should markedly improve my symptoms as it did the last time. Since I have been spending more time laying down lately, my symptoms have gotten worse. I believe that in order to feel better, I have to keep moving, constantly stimulating my circulation particularly in the legs and I will not be able to go extended periods (in my case about 4 months) without exercising ever again.

For a more comprehensive look at what prolonged bedrest can do to the body even in healthy individuals, please check out this link. Whether you agree or disagree with the bedrest philosophy, it is interesting to consider how your own body responds to bedrest, and conversely, how it responds to exercise.

Atlas Orthogonal Chiropractic: Does It Work?

2011-02-25T00:13:00.000-08:00

Although I am a perpetual skeptic, and I openly admit that I don't entirely understand the science behind it, chiropractic adjustments have worked wonders for me. Particularly for my excruciatingly painful TMJ headaches. Following my car accident, I completed 4 long months of physical therapy and experienced little to no pain relief but a slightly improved range of motion. I also endured several massages, some of which offered temporary (lasting a few hours) relief and muscle relaxation, others which left me in worse pain than I had started with. I even completed a few months of bi-weekly acupuncture treatments which helped significantly, but the effects only lasted a day or two. About the only thing I didn't try during that period was chiropractic care, and I'm not really sure why. No one had suggested it yet. But I sure wish they would have.

About a year after my accident and I was still suffering from chronic, intense daily headaches (even after being fitted for and wearing my first custom mouthguard or 'therapeutic jaw splint' as they called it, on a daily basis). I simply couldn't stand the pain anymore. I had tried just about every over-the-counter pain relief method known to man, heat, ice, and even several prescription narcotic pain meds, and none of these offered even momentary relief. I was beginning to think that life was simply going to be filled with chronic and debilitating pain, which was a disturbing, discouraging, and painful realization for me. Everyone told me TMJ pain was among the hardest to extinguish in the human body, as the temporomandibular joint is constantly at work and never rests completely (it is at work when talking, eating, and even breathing). Basically, jaw joints never get a break. I consumed an exclusively liquid diet, wore my mouthguard day and night as instructed, and refrained from talking, chewing, singing--basically everything I previously enjoyed. At that point in time I would have been completely satisfied with even a slight improvement in the intensity of the pain.

One day a coworker recommended her chiropractor to me. She said he used a quick (2-3 seconds) and painless method called the atlas adjustment. I had never heard of the atlas before and wondered what it was and what adjusting it could do for my headaches. So I figured why not give it a try, it couldn't have made things any worse. At the same time, I was afraid that if this didn't work, I might be all out of options and therefore be sentenced to a miserable life of pain. Luckily, that was not the case. My car insurance agreed to cover my chiropractic care until my benefits ran out. I had a few x-rays taken of my head and neck and some manual measurements performed by the chiropractor. He then determined the appropriate settings on the machine to adjust my atlas to. The atlas is the uppermost vertebra of the spine, also known as C1. The heavy human head essentially rests upon that tiny vertebra and if you have have ever been in a car accident of any kind or sustained any kind of fall or physical injury, then chances are your atlas may be off kilter. If it is off by even the slightest bit, a number of serious health and pain conditions may result. My chiropractor seemed to think that if he could get my atlas securely back into place (turns out mine was quite far off) that it would alleviate some of the pressure and pain in my neck, and encourage my jaw to also fall back into proper alignment. I laid on my right side as a tiny needle-like instrument rested behind my left ear and vibrated gently for a few seconds, completely painlessly. For the first month or two, I had 2-3 of these adjustments a week. Then weened off to once a week, then once a month, which seems to keep my atlas in place. However, the past 6 months or so I had not been to the chiropractor at all due to a change in insurance, and once again the bad headaches began to recur.

Last week I suffered one that lasted 4 days before I finally decided that I had to go to the chiropractor whether I had to pay out of pocket or not. Thank goodness I did. This time, all it took was one adjustment, and about 20 minutes later my persistent headache pain started to ease off, and within an hour it was gone. I awoke the next morning with a completely pain-free neck and jaw for the first time in several months. And the relief lasted for 4 whole blissful days. Then I went to the grocery store. The checker bagged my groceries so heavy that I had a hard time just getting them from the cart into the car. My chiropractor does not advise any heavy lifting, especially in the first few days following an adjustment. Well, those heavy grocery bags did the trick and the next morning I woke up with my usual jaw headache. So although atlas orthogonal adjustments certainly do work, the effects don't always last, especially if you engage in any strenuous activity afterwards. So looks like I will be going back to my chiropractor as soon as the snow lifts. Even if I end up having to pay, it's well worth it to be pain-free.

Coconut Water Comparison and Review

2011-02-16T20:56:00.000-08:00

For those of you who suffer from chronically low potassium like me and are sick and tired of synthetic sources like Gatorade, consider giving coconut water a try. It is nature's Gatorade, free of artificial colors, flavors, and excess sugar. My friend Nikki is into holistic nutrition and recommended it for me. She is one of those inherently smart individuals who is probably much smarter than my actual doctor and I hope to someday make her my nutritionist. So I trusted her opinion and gave it a try.

To my surprise, coconut water tastes good chilled and delivers an instant punch of potassium similar to the effects of V-8 juice. Although V-8 is still great, it is sometimes a bit too strong and tomato-ey for me to stomach when I am already feeling sick. So it is nice to have coconut water on hand as a back up. It agrees with me well and does not make me nauseous like Gatorade often does. It also contains A LOT more potassium, not to mention potassium from a natural source. It also contains other essential elements like phosphorus, magnesium and calcium, and of course, some sodium too which is great for most POTS patients.

There are currently two major brands of coconut water being sold and distributed in the U.S.: Zico and O.N.E. In terms of quality, price, nutrients, and even taste, they are both comparable and it is probably a matter of personal preference for most people. I picked up a few bottles of Zico first at my local Trader Joe's. My first sip was refreshingly reminiscent of a shot of Malibu Coconut Rum, which was nice considering drinking and dysautonomia don't exactly go hand in hand. So now I can drink coconut water to be reminded of a simpler time: that one blissful year between twenty-one and twenty-two before I got sick where I got to drink the occasional social Malibu and Coke without fear of health repercussions.

The one advantage O.N.E. has on Zico is better flavors. That's right: flavored coconut water. An instant trip to the tropics for your tastebuds available in three tantalizing flavors: pink guava, pineapple, and mango. These flavors also remind me of the tropical trio of Malibu Rums: Pineapple, Passion Fruit, and Mango. Of course, don't be confused, this is not a review of Malibu Rum, nor would I advocate drinking any kind of rum if you have dysautonomia. That would be very bad. Coconut water, however, is harmless and the health benefits are undeniable. The only downside I have discovered about coconut water is the price: 14 fluid ounces of Zico will run you about 2 bucks unless you are lucky enough to find it on sale somewhere and stock up.

Other Side Of The World

2011-02-05T20:45:00.000-08:00

The last few weeks have been considerably tougher for me than usual. Not in a health sense but in an emotional one. My father, who lives on the other side of the world, contacted me recently. He has essentially been a stranger to me for the past twenty years. I finally decided to "do the right thing" and write him back even after a lifetime of no effort on his behalf. Although I felt and still feel that it is too late to salvage any sort of a real relationship, I wrote him the letter. And writing it proved to be somewhat therapeutic for me. I did not resort to using profanity or overt insults like I wanted to, but I did give him a piece of my mind in a very direct yet tactful way. I received his response via snail mail and it did not contain any shocking surprises, just tired excuses. It was clear by reading his letter that he is every bit as self-centered as I had imagined, inquiring very little about me or my situation in life. He is clearly very focused on himself and always has been. The one good thing that has come out of this whole communicating-with-the-estranged-father-thing is that I finally learned a little bit more about my health history on that side of the family. He does not know how sick I have been for the past three years and how hard his sudden decision to contact me out of the blue has been on me. When I was a child, he was always out of sight and out of my mind. He admits in his letter that I was probably better off without him growing up. And he is probably right. Throughout my childhood I kept hoping to witness the slightest ounce of effort on his part. No birthday cards, no Christmas cards, year after year. Absence.

So its no surprise that lately I have been questioning a lot of things in my life, including the impact that his absence has had on me as a person. He certainly made life more difficult for my mother and I both financially and emotionally, and when I really think about it, I realize how lucky I am to have turned out as normal and well-adjusted as I have (although I certainly still have my issues, who doesn't?) His leaving at such an early age left me with very limited faith in relationships and marriage, and makes me very skeptical of any guy who tries to enter my life.

Over the last few weeks I have decided that I need a change in my life. A big one. A change of scenery, a move. I want to move to the other side of the water (about an hour away) to be closer to my family I have here in the states, the only family I have ever known. I also need to be somewhere that is more centrally located, so living near a ferry is a prerequisite, as is being within walking distance to a business/retail district where I can take care of light shopping and errands without always having to drive for miles. Ideally I will find a place that is newer construction but still has character, and also a separate space I can designate for my home office. Although I love my new job working from home, there are many elements of working in a conventional office environment that I really miss--especially the social aspect of always having coworkers nearby. By the time I finish my full-time work for the week, I am usually exhausted, my eyes hurt from staring at the computer screen all day, and the last thing I feel like doing is going out. But yet I miss it so much. I think living in a new place would provide a nice change of pace, and being closer to things would enable me to at least leave the house on lunch breaks with more minimal effort. Where I currently live, I am too far away from most places, and the fact that I can't drive very far due to dysautonomia makes me feel trapped in a tiny bubble that I am ready to escape from. I am sure many of us have felt that way at times, but lately I just can't shake it. I haven't felt like myself. Sometimes I wonder if I may even be a little depressed. However, this time I don't think it's anything therapy sessions can cure. So it's time to take matters into my own hands and make a sensible change to snap myself out of this rut.

Guest Post: Defying Gravity

2011-01-25T20:17:00.001-08:00

The following is a guest post written by a good friend of mine from college, Marie C. Sakai. She drew her inspiration for 'Wings' from the song 'Defying Gravity.' Marie is an amazingly talented artist, writer, and above all else, a wonderful human being. She is an editor for All Things Healing and teaches art to children in Oregon. Check out her personal blog and her Facebook fan page. Her above illustration, "The Illumination of Energy," was published in the Fall 2010 edition of 'Touch Magazine.'

Wings

When will your wings dry my beloved? When will you fly the sky again across moon beams and pyramids and find yourself in love again with the world you came out of?

When will you soar the sky, take a quantum leap into the world farther than the eye can see and the ear can hear--farther than anything else my dear. How far will you go how far will you come? What is that you have been longing to undone and what is it you have been longing to do inside of me and you.

Where are those wings now? Furled and encumbered, I know it true. But don't worry my child, my love, My beloved you'll start happening too.

You may not be able to defy gravity yet, but you know that would be the perplexity of the whole thing definitely. You may not be able to justify what and why things happened to you--but I'm not interested in the why, I just want to know what your soul feels like when it soars that sky so blues, so augmented hue of greens, that you fly the sky far away that you go where you soul leads you to stay. I want to know what happens when you go--what happens when you know all the souls that go with you-are drying their wings too.

mcs

Head Trip Massager

2011-01-17T20:09:00.002-08:00

This product is a must-have for anyone suffering from a chronic illness like dysautonomia. The Head Trip Massager, available at Bed Bath & Beyond, retails for a mere $9.99 and provides instant, hypnotic relaxation. It is like the best scalp massage you've ever had, instantly transporting you to a serene, calming paradise. My massage therapist had one and tried it on my scalp following a massage and it felt amazing. I then decided to purchase one myself and it is probably the best ten bucks I've ever spent.

The Head Trip is great because it is not electric or battery operated, you can take it anywhere, and it is inexpensive, lightweight and good quality. There are, however, still a few minor issues with this product. Beware: if you have long, thick hair like mine, even one use may tangle, tease, and knot your hair badly. So do not use it if you plan to go anywhere afterwards. Instead use it before bed to promote relaxation and restful sleep, or in the morning before you do your hair. Also, this product is inevitably more relaxing if someone else uses it on your scalp. Luckily, it is easy to use, does the work itself and requires minimal effort from the other person. Because this product promotes natural muscle relaxation, it may be good for people who suffer from headaches. It actually helps take the edge off my stubborn TMJ pain.

If you are a fan of this product, you may also like the Body Trip Massager, also available at Bed Bath & Beyond for $12.99. It is great for back and leg massages, encouraging better circulation and natural relaxation.

Why It Is Important To Obtain Your Medical Records

2011-01-12T18:55:00.000-08:00

If you suffer from what most doctors consider a "rare" or unheard of medical condition, chances are, you have been to more than your fair share of doctors in order to get a valid diagnosis, and if you're lucky, maybe even get some treatment. And if your experience has been anything like mine, you may not even be able to remember exactly how many doctors you've been to. I've been to about 25 different practitioners in a three year period. Between a massage therapist I only visited once, to an acupuncturist I saw dozens of times, I know my medical history is floating around out there all over the place, and certainly not just confined to my PCP's office. The funny thing is, I have seen very few of my own medical records; which I admit is entirely my own fault. It is the patient's responsibility to request and collect them. Doctors don't typically offer them up unless you submit a formal request which often involves paying the doctor's office a fee for the copies. I still need to take the time to contact all these doctors offices and gather my records from each and every place I have been a patient at in the past few years. Be forewarned: gathering your medical records, even from just one office, can sometimes be a time-consuming and frustrating process. One where you may have to deal with incompetent office personnel and wait a ridiculous amount of time to receive your records. Be patient, but also be persistent: conduct frequent follow-up phone calls to ensure that your requests weren't forgotten and that your medical records are on their way. Arrange to pick them up by a certain date if possible, that way they are operating under a deadline instead of mailing them out at their own convenience. Once you receive your records, it is important to review them carefully. If you notice any gaps, missing records, untrue or incomplete information, be sure to file a complaint with your insurance company, medical board, and if necessary, contact a lawyer if there is evidence of slander or negligence in your files. This doesn't happen often, but if it does, it's important that you take the appropriate steps to correct the problem.

By now you may be wondering exactly why gathering your medical records is so very important. Other than satisfying your own curiosity, having your medical records on hand serves some very valuable purposes.

1) Lawsuits. Whether you are filing for one, or involved in one, the first thing most lawyers will request is your medical records--whether the case directly concerns your medical history or not. After my car accident, I had to release some of my medical records to lawyers for review. Therefore, it is beneficial to know what doctors are actually saying about you.

2) Provide Documentation for Disability. When applying for disability, your medical records will be under scrutiny to ensure that you are a deserving recipient and are actually unable to work. Your medical records will either help to support or refute your claim.

3) Track your own progression over time. You should know your own medical history like the back of your hand to save yourself from repeating unnecessary costly medical tests and to avoid potentially preventable medication allergies and reactions. It can also be beneficial to access your old blood work records and test results to see how things have improved or declined over time.

4) Protect your reputation as a patient. It may be important to know what your doctor really thinks of you. If he really thinks you are a hypochondriac but doesn't ever say it to your face, that information may be following you around from doctor to doctor for years to come via your medical files. Reading the doctor's comments is also a great way to get to know him better. Does he take thorough notes after each appointment, or only jot down a few key words each time? Generally, the more detailed notes, the better.

5) For tax write-off purposes. If you itemize deductions on your income tax, things like dental work and chiropractic care may be able to be written off at a small percentage. Talk to your accountant for more details.

Top 10 Cost-Cutting Tips for People with Chronic Illness

2011-01-04T01:56:00.001-08:00

1) Cut your current cell phone bill in half by switching to a pre-paid plan like one of the Straight Talk Cell Phone Plans from Walmart. Pre-paid plans allow you to avoid all those pesky local and federal taxes while still getting quality service and reception (pre-paid providers use the same cell-phone towers the four major nationwide providers do) so your clarity and strength of signal shouldn't be sacrificed. Also, pre-paid plans offer a refreshing flexibility that standard contract plans don't: you can adjust your plan on a month-to-month basis to meet your talk/text/web needs. For instance, save more money during the months you don't plan on using your phone as much by opting for the $30 plan (1000 min, 1000 text, 1000 MB of web usage). Otherwise, enjoy unlimited everything without fear of overage fees for a clean $45 per month. For many people, an unlimited cell phone plan is sufficient and they choose to discontinue their land line phone service altogether and rely on their cell phone. However, if you still need a land line phone for emergency and local calls, contact your local phone company to determine if they offer a reduced rate for people with disabilities or low incomes. While you're at it, call your local city or county offices to find out if they participate in the utility tax refund program which qualifies eligible low income customers to be reimbursed for the amount of tax paid on utilities throughout the year--could be as much as a few hundred dollars by the end of the year depending on where you live.

2) Cut your cable bill significantly by switching to basic cable (sometimes as low as $10 a month for about 30 basic channels) and consider enrolling in Netflix for as little as $7.99 per month to enjoy unlimited streaming of new release DVDs and TV on DVD. Enjoy unlimited online streaming and DVD rentals delivered directly to your doorstep from Netflix for just $9.99 a month. Or, simply enjoy streaming thousands of your favorite programs from sites like hulu.com for free and at your convenience.

3) Cut your car insurance premium without sacrificing coverage by calling your agent to inform them that you are no longer commuting and have your policy switched to a "pleasure driving" policy. You may also qualify for the pleasure use rate if you live within a certain mileage radius of your job (varies depending on your insurance company). However, if you are no longer commuting to school or work, there is no need to pay the commuter rate anymore so be sure to let them know and you could potentially save hundreds of dollars per year.

4) Consider grocery delivery from Safeway.com, available in many communities nationwide. Where I live, it only costs $6 extra to have your groceries delivered right to your door. This not only saves gas and time, it can also save the headache of feeling woozy or sick while waiting in line at the store or carrying groceries in and out of the car. If you ask me, that's worth an extra $6 any day. Also consider participating in a local produce club like Local Harvest or Terra Organics that provides a box of fresh, seasonal organic produce to your door for as little as $20 per week. This option ensures that you will eat fresh, healthy foods and also provides some much needed variety, flavor and excitement in your diet. The selection varies weekly and takes the guesswork out of that inevitable, daunting question, "What do I feel like eating this week?" It enables you to try new, healthy, whole foods while supporting local farmers and the local economy. It also encourages you to attempt new recipes.

5) Take advantage of free shipping and coupon codes from online retailers. Online shopping also enables you to search for the best deals (which can often be tediously time and energy consuming) without ever leaving the couch in the comfort of your own home. Seize the opportunity to read product reviews from other customers gauging their satisfaction with the product before you purchase--one smart and surefire way to predict whether or not you will be happy with the product. That's one advantage conventional shopping doesn't offer. Most retailers offer a free shipping incentive if you purchase over a certain dollar amount, so make sure you prioritize and group items accordingly in order to qualify for free shipping.

6) Consignment stores offer quality new and gently used clothing, shoes, and accessories at nearly half of department store retail prices. The shopping experience at a consignment store is also much more pleasant and much less tiresome and overwhelming than at a department store or the mall. Think: small, cozy store brimming with unique boutique-like items and personalized attention from the store owner vs. long lines, either pushy or hard-to-find salespeople, and high prices. Many consignment stores will also consider trading items in their store for items you bring in, purchasing items from you outright for cash, or placing items on consignment until they are sold where you will then get anywhere between 40 and 60 percent of the profit.

7) For free or reduced-cost haircuts, manicures, pedicures, and facials, consider going to a local beauty school to reap the talents of beauty-industry newcomers. Don't be afraid, usually trainees are fully supervised by their instructors during the procedures, and if you are not satisfied with their work, someone else will step in and fix it to meet your specifications and you won't be out any money.

8) Save on prescription drugs through participating prescription drug discount programs like the ones offered by Rite Aid and Walgreens pharmacies. This is a great option if you find yourself without insurance or in need of a little extra assistance. Many states also have prescription assistance programs you can enroll in for free if you meet eligibility requirements.

9) Call your local Department of Social and Health Services office to check your eligibility for social programs if you haven't done so already. Even if you don't qualify for direct cash aid, you may still qualify for other valuable programs like food assistance or childcare, especially if you are already on disability. Also, keep in mind that if you owe debt due to medical bills, the state or the hospital itself may offer financial aid programs: sometimes all you have to do is inquire and simply tell them your situation and they will forgive a portion or sometimes even all of the bill without it adversely affecting your credit score.

10) If your physical health has deteriorated significantly and you find yourself struggling with basic tasks at home or in public, you may benefit from having a service dog around. Although they can be very expensive because of their years of extensive training, there are many programs out there offering low-to-no-cost service dogs to eligible candidates.

Verilux UVC Sanitizing Wands May Help People Achieve A Cleaner, Healthier New Year

2011-01-03T19:13:00.000-08:00

Being a chemically sensitive individual and a germ-o-phobe certainly don't mix. Most germophobic people rely on stringent chemicals for cleaning. For me, that is simply not an option. I guess I should clarify, I am not a true, extremist germ-o-phobe, more like someone who just likes to keep a clean living space. I regularly attack dust mites by damp dusting and vacuum a few times a week to ensure that dust levels are low. Yet I still seem to suffer from annoying allergies and awake each morning with a slightly stuffy nose on the good days. Last year I learned that I have a deviated septum (turns out that is a euphemism for a broken nose) that I acquired during my car accident 3 years ago. Since then, it has been hard to breathe easy, especially in other people's homes that may not be as clean or dust-free as mine.

I have been searching for a chemical-free cleaning solution for a long time and stumbled upon the Verilux UVC Sanitizing Wand on a blog. The blogger gave the product a glowing review which I now believe to be true. The wand comes in regular and travel size options, is battery-powered and utilizes the same UVC sanitizing technology that my toothbrush sanitizer does. It is 100% chemical free, odorless, and safe. It can be used to safely and efficiently sterilize any surface from counter tops to mattress tops. The only major drawback to the product is that it can take awhile to sanitize large surfaces like bedding if you are planning on sanitizing every square inch. The best thing about this product is its portability and the fact that you can take it with you when you travel to create a cleaner environment. Remember, killing all bacteria in your home isn't necessary so don't go overboard. However, this product can be particularly helpful during the cold and flu season. Any extra measure to avoid getting sick on top of dysautonomia is a good idea. Opt for the travel-size option since it offers the same technology at half the price and is more portable.

Resolutions, Revisions, and Regrets

2010-12-28T15:05:00.001-08:00

As we approach yet another new year, it is a time to reflect on 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!!!

2010-12-22T23:54:00.000-08:00

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

2010-12-16T18:05:00.000-08:00

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

2010-12-11T21:03:00.001-08:00

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

2010-12-08T18:31:00.001-08:00

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

2010-12-01T01:19:00.000-08:00

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!

2010-11-21T20:05:00.000-08:00

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?

2010-11-16T21:16:00.000-08:00

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 being 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?

2010-11-11T02:18:00.000-08:00

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.

Luckily, 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 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!

2010-11-04T18:28:00.000-07:00

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

2010-10-30T15:09:00.000-07:00

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

2010-10-24T12:58:00.000-07:00

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

2010-10-14T23:04:00.000-07:00

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

2010-10-11T22:50:00.000-07:00

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 these 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?

2010-10-05T23:22:00.000-07:00

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 bodies 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

2010-09-27T16:45:00.000-07:00

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

2010-09-22T21:50:00.000-07:00

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

It's Dysautonomia Awareness Week!

2010-09-16T01:05:00.000-07:00

In honor of Dysautonomia Awareness Week, I compiled a comprehensive list of resources for patients to turn to, especially those newly diagnosed. I know when my electrophysiologist first mentioned POTS, he sent me to the POTS Place website. From there I ventured onto Wikipedia and YouTube where I was relieved to find other people talking about this seemingly rare condition. The whole disgnosis thing was a little less overwhelming with resources to turn to. So, without further adieu, here is a list of resources I have turned to at one point or another:

Online Resources:

-DINET.ORG, including a very informative "POTS Place" section of website

-TheDysautonomiaConnection.com

-http://en.wikipedia.org/wiki/Dysautonomia

-http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

-YouTube.com/5AwesomePotsies

-YouTube.com/TheManlyPotsies

-YouTube.com/TeenPotsyProductions

There are also multiple personal YouTube pages worth checking out! Too many to list here!

Personal blogs on Dysautonomia and POTS are also great reads.

Facebook.com

-Demystify Dysautonomia

-12 More Pages

-The Faces of Dysautonomia

-The Dysautonomia Connection

-The Spoon Theory

-5 Awesome Potsies

-Living with Bob (Dysautonomia)

In-Person Resources, visit your local:

-Chiropractic Office

-Massage Therapist

-Physical Therapist

-Acupuncturist

-Naturopath

-Internal Medicine Doctor

-Cardiologist or Electrophysiologist

-Neurologist

-Endocrinologist

-Sleep Medicine Specialist

-Nutritionist

-Personal Trainer or Cardiac Rehabilitation Specialist

-Psychologist or Psychiatrist

-Hair stylist (to vent to!)

Yes, this list is overwhelming. And if you hate appointments as much as I do, you know what a mentally and physically draining chore they can be. However, assembling a strong team of specialists to call upon when needed is a helpful thing. When dealing with a complex illness like dysautonomia, it seems no one doctor can singlehandedly manage every symptom. Thus they refer you on to another doctor. And on. And on. Until one day the appointments finally slow down, and the doctors (if they are nice) may be reached via phone or email with questions or non-emergency concerns. My best advice is when you find a doctor that you click with, whether they are a chiropractor or a cardiologist, stick with them even if they are not a dysautonomia expert. If they are willing to listen to you, conduct some simple research and not "dysmiss" you, then chances are they are someone worth having on your team. What we all need are allies who will go to bat for us when the going gets tough (I am just full of cliches tonight!) I am not just talking about medical doctors and professionals here. One of the most helpful things for me has been building a solid network of friends and fellow sufferers to gain support and strength from. Facebook is a great place to start. There is also a program called "Meet Others" available through the DINET website.

Special thanks to talented graphic designer Rachael Rodriquez for creating the special Dysautonomia Awareness Week poster pictured above!