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

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

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

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

Celebrate 'Day of Visibility' for Invisible Illnesses

Nefarious Nightmares!!!

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

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

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

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

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

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

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

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

Grad School?

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

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 that 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

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!!!

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

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

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!