In the middle of difficulty lies...opportunity?

As I sit quietly awaiting a CT scan of my diseased sinuses wearing a 24-hour holter monitor, a neck brace and a mask over my face to protect my weakened immune system in a waiting room full of strangers, I wonder, when did my life get so complicated? Just under ten years ago I was having the time of my life, working and going to school full-time while enjoying an active social life. I have to be totally honest here: I really, really miss those good ol’ days, before chronic illness struck out of the blue and overnight. Since 2007 I have endured countless doctor’s appointments, invasive tests, and probably had hundreds of tubes of blood drawn out of my body. Diagnosis after diagnosis has accumulated on my medical record, which has now become a dauntingly long and complicated list. I Just. Want. To. Be. Normal. Again. 

In the midst of the worst sinus infection of my life I reflect upon these things. Two and a half months of antibiotics and on my third one now and we’re deciding whether or not it’s really time for surgery, which has been delayed for a few years due to a host of new and complex conditions arising. Sinus surgery has not exactly been top priority until now, because the antibiotics have stopped working. I am terrified at the prospect of surgery, but my facial pain is so severe and unrelenting that I am desperate for some relief. A whole year of steroids have wreaked havoc on my immune system and my body needs a break from fighting the giant sinus infection that is my life. 

I’m certain many of you can relate to how I’m feeling. Frustrated, overwhelmed, angry, perplexed, scared and a bit sad that I’ve had to endure so many maladies over these past ten years while the majority of my peers have been living it up: traveling, partying and achieving major milestones. It was definitely not easy losing most of my twenties to chronic illness. 30 was the worst year yet due to getting hit by yet another scary and sudden illness called Guillain Barre Syndrome, which stole my ability to walk within three days time, and which I’m still not completely recovered from. I still have some residual nerve damage in my legs and probably my arms, but at least I can walk again and open a package of cheese for myself. So far 31 isn’t shaping up to be so grand either. My chronic sinusitis is clearly kicking my butt and with that I’ve had some frighteningly familiar neuromuscular symptoms return. I could scream from the sheer frustration of still being a reluctant passenger on the seemingly never-ending doctor merry-go-round.

But, if the words Albert Einstein so eloquently spoke are true, does opportunity really lie in the middle of difficulty? Perhaps I should be approaching this surgery optimistically, as the goal is to help me breathe better, which may end up improving many of my other symptoms as well. It’s all about shifting my perspective of the operation from fear and dread to optimism and opportunity.

I hope you, dear reader, have been doing well during my absence. It’s the beginning of a new year and I wish you improved health and happiness!

I Am Thankful for The Chronic Illness Community

Every year on Thanksgiving I take a minute to reflect upon what I am thankful for. I have found hope, solace and support among the chronic illness community of spoonies, zebras, potsies and zipperheads! I have met some of my best friends here and it's comforting to know that we can relate to each other's struggles on a personal level. It's also a major victory when one of my chronic illness friends has a good day or their health improves. We all know not to take those days for granted and what a major milestone health improvements can be. Even the smallest health victories are worth celebrating. It's amazing to have friends of all ages, from all different walks of life, from all over the country and all over the world sharing the same conditions. Although these cruel conditions are often what unites us initially, I have found that there is often so much more that we share. We are much, much more than just our illnesses and are certainly not defined by them. I often talk excessively about my condition to my chronic illness friends simply because they really get it, and they can relate. But I have found that the majority of us share many common interests and attitudes beyond our shared symptoms. If you are reading this, I am thankful for YOU!

So True!

A friend and fellow dysautonomia warrior posted this on her Facebook this morning and it really resonated with me! People in the chronic illness community are among the strongest and bravest on earth.

My Childhood Idol Coped with Chronic Illness Too!

Every oh so often I get nostalgic for the great 1990's. For me, my childhood represents a simpler time when I was blissfully healthy and carefree. I was always singing and dancing. And so were my friends. I fondly and distinctly remember one of our favorite childhood pastimes was to "play TLC." We would spend hours getting dressed up like TLC, performing dance routines to their music videos that we had memorized and singing along with the lyrics of every song. We even did our makeup to do our best to resemble our respective songstresses: T-Boz, Left-Eye and Chilli, the CrazySexyCool girl group that dominated the 90's and revolutionized the faces of hiphop, R&B and pop music. They were the epitome of girl power long before the Spice Girls ever came to be. All I ever wanted to be when I grew up was a member of TLC. Nevermind the fact that I was a little white girl from the suburbs. In my eyes, they were the coolest, prettiest chicks on the planet. I identified with them. They were three petite young women who could sing and dance with style. They preached about self-esteem, safe sex and friendship among other things. I absolutely idolized them. I'm certain many other little girls of the '90's shared my sentiments.

The other night I finally watched CrazySexyCool: The TLC Story, VH1's biopic of the epic girl group's rise to stardom. I was extremely impressed with the casting of this film, as the actresses were dopplegangers of their characters, especially 'Lil Mama who portrayed Lisa "Left-Eye" Lopes with a keen awareness of her character. She had clearly done her homework. I also appreciated the music video reenactments which were spot-on. I had a fun walk down memory lane but was also shocked by the level of turmoil each TLC member experienced behind the music. Tionne "T-Boz" Watkins' story struck a nerve within me as it hit particularly close to home. She battled a rare chronic, genetic and life-threatening condition called sickle-cell anemia and was hospitalized for it on several occasions. Initially she kept her illness a secret from the public and the press as it is largely an invisible illness. At the height of TLC's fame she came out about her illness and went on to become a spokeswoman for the Sickle-Cell Anemia Association. She was told she'd never live past 30 and never have children and she has done both. She has a beautiful little girl named Chase and is still managing to live a full life in spite of her illness.
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Her voice is still as rockin' as ever, as she and Chilli reunited in the recording studio at the end of the movie. What I didn't realize was that while TLC was touring, their second manager scheduled hospital breaks for T-Boz and had EMT's on hand at all times who were prepared to manage her condition. When I was a little girl I had no idea what my favorite singer was going through with her health behind the scenes of what I perceived as a glamorous lifestyle. Now that I have a better understanding of their personal struggles, I have even more respect for the girl group I already revered. They will always, always be my favorite. If I could ever do lunch with the remaining members of TLC, my life would pretty much be complete.

For more information about sickle-cell anemia, please visit http://www.sicklecelldisease.org/.

Year in Review

Although I don't write a Christmas letter or anything of the sort, I figure my dear blog readers tune in from time to time throughout the year and are probably all too aware of the health goings-on in my life. So I will try my best to keep this brief and not too negative. It has been one heck of a year to say the least!

Let me start with the good. Certain aspects of my health have improved significantly. My resting heart rate is good! Normally anywhere between 56 and 66 beats per minute on any given day. And there have been many days where my standing heart rate hasn't been so bad either! (70's, 80's, 90's, I rarely reach the 100's anymore!) I am always thrilled to check my blood pressure monitor and see relatively normal numbers there too. It helps me breathe easier when I think about how those same numbers used to look a year ago. Can I say my POTS is gone? Well, no. There are days when my HR still spikes upon standing, I still get the occasional dizzy spell and brain fog seems to plague me on a daily basis. But when I compare my symptoms and my numbers to what they were 5 years ago the difference is dramatic. And there are even some days where I even feel somewhat normal.

In terms of chronic pain and limitations however, this has been the worst year of my life. The TMJD pain is unbearable half the time and it impacts my life severely. I have had to drastically modify my diet to soft foods exclusively and master the art of being quiet which has proven very difficult both emotionally and functionally. It is really tough to not be able to make phone calls to doctors or insurance companies. Not to mention not being able to speak to friends and family very often. I have had to shell out $1300 for a home ultrasound machine like the kind they used on me in Physical Therapy after my insurance company cut off physical therapy completely. It is about the only thing that brought me any real relief. I am currently going through the appeal process with my insurance company about covering the ultrasound machine as durable medical equipment for a chronic condition.

A local neurologist also thinks Botox injections would help quell the muscle spasms in my jaw and facial muscles, but insurance does not want to cover that either because it is not FDA approved for anything other than the treatment of migraines (which I am not having). Although my medical insurance does cover TMJD, they certainly don't seem to cover any of the treatments that have worked for me. So the battle continues. Sadly, this type of battle has become all to familiar to many of us. Having to fight for the basics all the while fighting our own battles against our ailing bodies. My wish for the new year is that less people will suffer and struggle with their insurance companies. That we will not have to fight as hard to receive adequate treatment and relief.

May my friends and readers experience improved health and  relief from chronic conditions in 2013. Keep on fighting the good fight and never never never give up!

Holiday Giveaway Courtesy of Katie's Knits!

'Tis the season for fabulous knitted goods! And Katie's Knits has plenty of them! She does everything from custom blankets to handbags, all created with love and care.

It is no surprise that there is a lot of talent in the chronic illness community and Katie's happens to be knitting. I have great respect for anyone who can knit as I simply lack the patience for such painstakingly intricate work. But Katie has a flair for it. She uses the softest, high quality yarn and crafts her creations with convenience and practicality in mind. I am in love with this purple handbag.

And these cute coin purses, which are very handy on a wheelchair.

And these scarves. I am particularly fond of the pink one!

If you'd like to win some lovely knitted goods just in time for Christmas, please comment on your favorite item below and head over to Facebook and 'like' the Katie's Knits page. 

I will be selecting three lucky winners drawn randomly from a Santa Hat on Monday, December 17, 2012. Good luck!

In the meantime, if you'd like to purchase some of Katie's Knits, contact her about a custom creation via her Facebook page to take advantage of special holiday pricing!

Being Human is Hard Sometimes

I have a huge aversion to vampires. I have not seen a single Twilight movie and have a feeling I'm not missing out on much. I don't buy into the whole "vampires are cool" craze. There are just too many darn vampires on TV these days. So I found myself surprised when I could not stop watching the UK version of Being Human. It came highly recommended by a fellow potsy with great taste in television, so I decided to give it a try. Aside from being permanently scarred for life by a few gory scenes, I actually gleaned quite a lot of good out of this show and found myself empathizing with the main characters' struggle to be "normal" humans.

Being Human features a werewolf, a ghost, and yes--a vampire--as roommates living together in Annie the ghost's old house which George the werewolf and Mitchell the vampire rent from Annie's former fiancé (Annie the ghost is invisible to most people). Later on Annie remembers that Owen her despicable sociopath of a fiancé was the one who pushed her down the stairs, resulting in her untimely death. Annie is definitely the character I related to the most. She cannot be seen and heard by most people and leads an isolated life mostly confined to the house. The characters all seem to spend a lot of time at home, however George and Mitchell are out in society working at a nearby hospital and masquerading as human.

As irony would have it the "monsters" and ghost are not the true evil characters on the show. It is the Catholic priest, the misguided professor and the sociopath fiancee (all real humans) who are perhaps the most evil and seem to lack any sort of profound moral compass. Although they make big mistakes, the non-humans are actually good-hearted and consistently try to help people in spite of their own issues.

Here is how I personally relate to each of the main characters:

Annie: I wouldn't be surprised if a lot of POTS and EDS patients easily relate to Annie the ghost. She spends most of her time at home as a quiet observer of the goings-on around her. She is invisible to almost everyone and cannot be heard either. She cannot really "live" her life as she is a ghost and had all her earthly dreams and goals ripped from under her when she was pushed down the stairs. Her afterlife lacked purpose and she is often struggling to find her place in the world. She is arguably the nicest character on the show and genuinely goodhearted and wholly undeserving of what happened to her. She also wears the same outfit in every episode. Comfy clothes and cute Ugg boots.

George: George is a good-hearted werewolf who wants desperately to lead a normal life. He has to hide his secret from friends, coworkers and even tried to hide it from lovers. Although I don't deem his problem to be quite as severe as the vampire or the ghost's considering he only has to deal with spontaneously transforming into a werewolf one night a month during the full moon, it is still a huge disruption to his life. I relate to George because I too transform into a very unpleasant person during the first few days of my period and therefore I try to lay low and avoid people during that time so I don't say something I'll later regret.

Mitchell: Although I find it hard to relate to Mitchell much at all, a part of me does feel sorry for him. Sympathy for a vampire? That doesn't sound like me at all, but it could have something to do with the fact that he is really, really, ridiculously good looking. Although he has some bad relapses, he tries hard to be a good vampire and not feed on humans anymore. Mitchell perhaps most strongly resembles the drug addict the show's writers had originally intended for his character. He also struggles to form meaningful and lasting relationships with the other characters except for George and Annie that is.

The first three seasons of Being Human (only 8 episodes each!) are currently available on Netflix. I highly recommend this show if you like sci-fi or drama. Be prepared to shut your eyes for a few scenes if you have a weak stomach like me. Other than that it's a great show that can teach you a lot about humanity, values, and perhaps most significantly, the struggle to maintain normalcy with an unwanted affliction. Many of us with chronic illness can relate.

To Share or Not To Share?

Although I haven't yet officially committed to the WEGO Health Blogger challenge to blog each and every day during the month of November, I found myself intrigued by many of their prompts including the "disclosure post": how I decide what I do share and what I don't share with my readers.

The answer is simple: I share everything. Everything I've learned, observed, experienced throughout my journey with dysautonomia. Anything and everything that may possibly help my readers gain insight into their own health crises. I feel it is my job to help fellow sufferers in any way I am able.

My personal philosophy (and my nature) is to be highly self-disclosive. Possibly too self-disclosive at times. I lay it all out there. The good, the bad, the ugly. Having a chronic illness is anything but pretty and I am not so good at sugar-coating things. So again, I share it all. Sure, you personally may have no interest in reading about my persistent acid reflux or no desire to read me ramble on about the inherent injustices of invisible illnesses, but someone might. Some reader out there in the world may identify with something I have written. They may feel the same way I have. Or experienced a similar struggle themselves. And if I can help even one person feel a little less alone, then my efforts were not wasted.

When I began blogging, I didn't anticipate having so many readers, or any at all for that matter. I started this blog as a way to cope. To get my frantic, troubled thoughts out of my head. The act of writing has proven to be therapeutic for me. I feel much better after getting all the crap off my chest. But now that I have been blogging for a little while, Defying Gravity has evolved into a more well-rounded blog complete with fun stuff like giveaways, guest bloggers, product reviews and pop culture recommendations. Over time I would like to start sharing recipes, how to's and maybe even vlogs. But for now I am proud of myself for simply managing to post on a consistent basis and hope to continue blogging everything I can in the future.

Fall TV Picks!

Sometimes, with chronic illness, one is forced to watch a lot of television. With a bad head cold, one is awarded the opportunity to catch up on all this television. Good thing I am a bit of a TV buff. What am I watching this season? Here are my favorites.

Sunday night: Revenge

Monday night: Dancing with the Stars All Star Edition on ABC, Hoarders and Intervention on A&E

Tuesday night: Hart of Dixie on The CW, Abby's Ultimate Dance Competition on Lifetime, Parenthood on NBC

Wednesday Night: The New Normal and Guys with Kids on NBC

Thursday Night: Beauty and the Beast on The CW, Glee on Fox, Don't Trust the B in Apt 23 on ABC

Friday Night: Malibu Country and Shark Tank on ABC

Saturday Night: Saturday Night Live on NBC

Should People With Chronic Illness Become Pet Owners?

A big thanks to guest blogger Sandra Scott of Simple Living for weighing in on an important topic I have been pondering for quite sometime myself. Although I don't have a dog or cat yet, it is definitely something I'd like to do within the year.

So you want to become a pet owner. The rewards almost always outweigh the amount of work and the risk that your new furry companion may ruin your favorite shoes, rug, or sofa. However, there are a few important factors to consider before committing your time, energy, and income to a new pet.

For starters, consider your personal energy level. If you suffer from a chronic illness, you may also experience pain or debilitating fatigue at times. Would you be able to walk a rambunctious dog everyday? Or would a calm and cuddly feline companion be more suited to your unique needs? Also consider the potentially negative effects of pet dander and fur on your health. As long as you are able to keep your house and pets clean, pet dander probably won’t pose a significant threat to your health (unless you are asthma and allergy prone). If you do happen to be dander-sensitive, consider a cute turtle or even a beautiful array of tropical fish.

Every pet is different, and some require more maintenance and attention than others, but every pet is worth it in their own special way. If you find it difficult to meet your dog’s grooming needs, there are plenty of places to take them in for doggy beauty treatments fairly affordably. That said, it is still important to factor your pet’s potential grooming and veterinary needs into the monthly budget along with their food to determine whether or not you can really afford an animal.

Although experts can’t seem to agree on exactly why this phenomenon occurs, it has been proven that pet owners enjoy better overall health and longevity than their petless peers. I would like to think it has something to do with the power of unconditional love and companionship. Even when your health fails, your pet will remain a loyal companion by your side no matter what. They expect love and attention in return, but as long as you are able to adequately meet the basic needs of your pet (food, water, clean shelter, and some exercise) then getting a creature companion may be a feasible and wonderful option, and may even serve to improve your overall health. Or at the very least, improve your mood. Who wouldn’t love to see a wagging tail and happy grin every time they’re feeling blue and under the weather? As far as I’m concerned, there’s no better way to brighten a day.

From Worrier to Warrior

Worrier: A person who torments oneself with or suffers from disturbing thoughts, cares, anxieties; one who frets.

Warrior: A person who shows or has shown great vigor, courage or aggressiveness; soldier.

Seems it has been awhile since I posted a general health update on all the random happenings of my crazy body. And a lot has been happening. The year was off to a crappy start with an emergency appendectomy that seemed to set the tone for the rest of the health craziness that would ensue. I was just relieved I awoke from surgery and that it had been a completely routine procedure free from any major complications. I had some MAJOR tummy troubles before (probably just my appendix going bad) and after the appendectomy but I saw a GI doc who gave me some medication to take briefly that seemed to do the trick and I am now on a once-daily acid-reflux medicine called Dexilant. It is a great drug. Not quite strong enough to knock out all of the acid when I eat junk foods, but on the days I forget to take it I notice what a big difference it is making. And unlike Prilosec which I had a hard time remembering to take twice daily, I only have to take Dexilant once daily (and believe me, that's hard enough to remember!) The caveat? It is an EXPENSIVE drug. Luckily I am now enrolled in a prescription discount program sponsored by the manufacturer so I get a 30-day supply for $20 instead of over $200. I hate the fact that I am now on a daily prescription as I try not to take anything since my body is hyper-sensitive to meds. Luckily I haven't experienced any noticeable side effects from the Dexilant so I will continue my daily regime in addition to improving my dairy-free diet which I am hoping to gradually make more alkaline in the near future.

For several weeks after the appendix surgery I was worried I might be experiencing gastroparesis symptoms as so many other potsies do, but my ravenous appetite has now returned and so I am convinced it was just acid reflux coupled with a little post-surgical constipation. Although I did not take any narcotic pain medicine after surgery, apparently constipation is almost a given side effect of any abdominal surgery even among the general population. I even received my first (and hopefully last ever) enema in the ER this year a few weeks post surgery. Talk about uncomfortable. However it was also comforting to discover that I am not the only one who has had to resort to such extreme and unpleasant measures after abdominal surgery, for once I was dealing with a COMMON problem. Which was refreshing for a change. And my scars are tiny and healed very quickly. They are barely noticeable anymore.

Speaking of skin, next month I have to see the dermatologist to get a "suspicious" looking toe mole biopsied. I knew all those years of daily flip-flop wearing would eventually catch up with my feet. No one ever puts sunscreen on their toes. It is an overlooked area of the body. I also have a few other spots they will probably want to biopsy since I have a family history of skin cancer. I doubt it is anything serious, but my insurance deductible finally having been met dictates that it's time to knock that appointment out of the way. Last Valentine's Day my mom had a basal-call carcinoma removed (successfully) from her face and that served as a big warning sign that it's time to pay more attention to my skin. My grandpa is also currently undergoing various skin cancer treatments including a new laser-light treatment to remove pre-cancerous growths all over his head. I am really hoping that this new treatment will clear it up for him because it's a painless, non-invasive approach and he has undergone painful removal procedures several times already.

Truth be told, random but important appointments like the dermatologist visit have taken low priority these past few months as I've been struggling with the worst pain of my life from intense TMJD headaches. I seem to be stuck in the bargaining stage of grief where I can't help but wish it were any other joint affected but my TMJ. That is the one I need to use the most in order to speak, feed myself, function. It is so hard to get by in the world without talking. People take that ability for granted everyday. I know I did. This pain really plays head-games with me since it is worst after speaking or eating (basically the two things I live for). It feels like my body is punishing me anytime I try to be myself and reclaim my lost identity by making a phone call or eating a burger (with a knife and a fork, swallowing the bites whole). My jaw goes out and the pain sets in. Punishment for doing the things I enjoy. Heck, just for doing the things that are necessary to sustain life. A food-loving girl can only survive off of smoothies and soy yogurt for so long. And I tend to lose all my marbles when I'm starving and not eating the kinds of foods that my body demands. Throw in days upon weeks upon months of pain-induced sleep deprivation and it's a recipe for disaster and dysfunction. Just getting through each day has proved to be quite a challenge the past few months and the pain has reached a point where the intense menstrual cramps I am accustomed to getting every month pale in comparison (although they have not changed in intensity at all). In fact, if anything my periods have been getting progressively more painful over time too (will deal with that one later as a trip to the gynecologist is not high on my priority list at the moment either). It's just that I know from past experience that my period represents a temporary state of pain, which makes enduring it much more bearable. There is an end in sight. TMJD pain has been discouraging because I seem to get the pain episodically but unfortunately these flare-up episodes last for months on end with no apparent rhyme or reason and I never know when the pain will finally cease. If the smell of BenGay didn't redden and burn my eyes so badly I would be rubbing it all over my face, head and neck on a daily basis.

Needless to say I have been "doctoring" for my TMJ issues again out of sheer desperation and have finally stumbled upon a few knowledgeable practitioners who didn't dismiss my pain with a prescription for valium and a box of tissues (as my gem of a PCP did at the beginning of this flare-up). I am now seeing a physical medicine doctor who specializes in pain management. He has a solid understanding of the complexities of the musculoskeletal system and has seen a few other EDS patients as well.

I am also seeing a physical therapist who has worked with Dr. Tinkle in treating his EDS patients. My jaw must have dropped open in disbelief when he not only knew what EDS was but had successfully treated it before. I will be attending physical therapy sessions with him 2-3 times weekly and receive an ultrasound treatment to each TMJ which so far has helped immensely considering I've only had two sessions. I'm optimistic that ultrasound therapy will provide some relief as my pain seems to be muscular in nature. I am also undergoing the needles in acupuncture again twice weekly for now but hoping to wean off to once weekly soon.

I gave massage another go last week with a knowledgeable practitioner who had actually had a cervical fusion surgery a few years back. I was also impressed with how well she knew the body but I am going to hold off on massage a bit longer as I think I'm doing too much right now and the sheer number of appointments every week alone is exhausting. Massage is supposed to be relaxing but I'm too stressed out by all these appointments to fully enjoy it. Once I wean off the acupuncture I would like to incorporate massage into my weekly regime. Thank god I had that appendectomy and my insurance is finally kicking in to cover these treatments (until the end of the year, that is!) I am dreading the day January 1st rolls around when I will have another deductible to meet before I can receive treatment of any kind.

Oh, also one more totally random finding worth mentioning that I probably haven't shared yet. This year so far I have had multiple x-rays (which revealed nothing except for constipation), two or three abdominal CT scans (found appendicitis), one head CT scan (they found a sinus infection on that one, told them I didn't need a CT to know that...) and an MRI of my TMJ's. I am supposed to get a full upright MRI of my head, neck and spine to check for an acquired chiari malformation and all related issues but I have decided to wait until after my birthday to do that because I'm not sure if I'm emotionally equipped to deal with another bad test result right now. Earlier this year my doctor decided to order an ultrasound of my neck to examine the lump in my throat I felt upon swallowing (which reminds me I have not yet scheduled the endoscopy I am supposed to get either. TOO MANY TESTS!) Anyway I did not expect them to find anything at all on the neck ultrasound. Figured it would just be another futile test, but to my chagrin they did find a small thyroid tumor. At 3 mm it is still too small to needle biopsy so it is just something I will have to have monitored yearly to make sure it doesn't grow any bigger. If it does then I will have to have a biopsy. But for now it is not dangerous and highly unlikely that it is any type of cancer. The endocrinologist I saw seemed pretty confident that thyroid tumors are an extremely common incidental finding and most of them are not harmful. Nonetheless it was and still is difficult for a worrier like me to forget that it is there...

Which brings me to my closing thoughts. The chronically ill are a very special population. We are not just worriers. We are also warriors. Can we be both simultaneously? Yes, although the two concepts would seem at odds to most people. We assume both roles everyday without even realizing it. Being a warrior is hard work. Not worrying about our health is even harder. I cannot imagine any of my "normal" friends or relatives enduring the endless medical tests and treatments we have. It takes persistence. Patience. Mental and physical fortitude. In between doctors' appointments, we often forget to live. Or at least I do. My goals have gone from hosting my own talkshow to simply making it to my next doctor's appointment on time. But does it really matter if I am on time? Or even in one piece when I arrive? Not so much in the grand scheme of things. I have accepted the fact that I am imperfect. All the labels and diagnoses mean very little to me anymore. I just want to be happy and pain-free, warts and all. And to transform my inner worrier into a proud warrior for good. Just like the musically-gifted Mr. Mraz has done...

Coconut Milk Comparison and Review

Up until about 3 months ago for everyday of my life I consumed several glasses of dairy milk religiously. Along with ice cream, cheese and yogurt. It all sat fine with me. Since having my appendix removed in January, however, I suddenly couldn't digest milk anymore. But I still needed a satisfying drink to accompany my cookies. Soy milk and rice milk are both fine (I personally think almond milk tastes like play dough), but I had heard good things about coconut milk and already enjoy coconut water so I figured I'd give it a try. Over the past few months I've tried just about every coconut milk on the market and these are my favorites in terms of taste and consistency. Nutritionally they are all relatively similar to each other and have potassium, b-vitamins and added calcium. My only complaint about coconut milk in general is that it lacks the protein that dairy milk has going for it.

Favorite Perishable Coconut Milk:

A tie between,

Silk PureCoconut Milk in Vanilla




So Delicious Vanilla Coconut Milk



I love both of these Coconut Milks and honestly don't have a preference. I typically get whichever one is on sale or I have coupons for. I always keep it in the fridge. One of my favorite ways to consume coconut milk is to fill a glass one third full of coconut milk, another third with pineapple juice and the other third with guava juice. Tastes a bit like a mixed drink (sans the rum, of course). The added vanilla flavor lends both of these coconut milks a bit more versatility. They taste fine on cereal and with cookies, rendering vanilla coconut milk a true dairy milk substitute in my opinion.

Best Shelf-Stable Coconut Milk:

Trader Joe's Vanilla Coconut Milk



It's no surprise that I am a huge Trader Joe's aficionado so TJ's shelf stable coconut milk was naturally the first one I tried and it even made my top ten list of Trader Joe's products. It is a great pantry staple and has a creamy texture and smooth flavor but it's not as nutrient-rich as the perishable coconut milks and doesn't have quite as robust a flavor in my opinion. However it's a great backup to keep on hand for when you run out of the perishable stuff and don't feel like running to the store.

Milkshakes and Muscle Relaxants

That about sums up my day...not as fun and 'relaxing' as one might assume by the title. Although some new health problems have cropped up this year, I felt like I finally had a handle on my intense TMJ headaches. In fact, I thought I was out of the woods in that department. No such luck. I haven't had a doozy of a headache like this since last year!

Not sure why I have one right now...except for the fact that I am almost positive that some higher power is playing a sick cosmic joke on me...it sure seems like I'm being punished for doing the things I love most: eating and talking. Which I have to refrain from entirely when I get a TMJ headache like this. And forget trying to have a social life or be successful at any sort of job. As if POTS weren't enough to deal with on it's own...thanks Universe for being such a sadistic jerk. One major, debilitating health problem is more than enough to deal with and already more than I can handle.



There's no real rhyme or reason to what brought this headache on (no excessive talking or chewing lately) but it started around the same time last year and lasted for MONTHS. Last year I saw a neurologist who suggested a misdiagnosis of 'new daily persistent headache syndrome' without so much as feeling the giant muscle knots that feel like marble-sized cysts sitting right beneath my scalp. My mom can feel them, my friend can feel them, I can feel them. All with our bare, untrained hands. It's creepy. Nobody else has muscle knots like that behind their ears and on the sides of their heads. These knots are movable, get bigger and smaller, and are somewhat relieved by massage. Feels like awful menstrual cramps in my head. When someone presses directly on a knot I get goosebumps on my arms from the intensity of the pain. And that's saying a lot considering I have a high pain tolerance (I didn't even take any pain meds after returning home from my appendectomy).

The amount of vigorous massage it would take to break these suckers up is unbelievable. And frankly the flexeril has done nothing but relax all my other muscles and not touch the ones on the sides of my head. My primary care provider informed me that there is really "no good muscle relaxant for those small muscle groups." Fan-freaking-tastic. The only thing I have yet to try to remedy these awful muscle cramps is botox.

However once I had gotten my headaches under control I didn't think I would have to deal with this intense pain ever again. I should have known better. I am afraid that if I go in and get botox in these muscles now that it may freeze them in their knotted position and leave me in pain for the three months that the botox lasts. No doctor seems to know much at all about botox for TMJ and they sure as heck do not know how botox works in an EDS patient.

To say I'm annoyed right now would be an extreme understatement. Narcotic painkillers don't even touch this and the muscle relaxants don't do much either. Wish I knew someone who was confident enough to try to put my jaw back into place or break up the muscle knots somehow. Desperation is setting in. I am scared that it is going to be a repeat of last year with a months-long headache. The majority of my spring and summer last year was spent in excruciating pain thanks to these stupid muscle knots. Is this common in EDS? Why do I only get them around my jaw? And most importantly, how do I get rid of them? Any suggestions?

Bah Humbug!

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.

Updates and Downtime

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!

Inspirational Art by EDS Patient Michaela Oteri

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.

Extreme Couponing with A Chronic Illness

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

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

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

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

-4 razors ($45)

-20 razor cartridges ($60)

-2 shaving gels ($8)

-3 bottles of shampoo ($20)

-1 bottle of organic conditioner ($7)

-1 body wash ($6)

-1 antibacterial hand soap ($4)

-2 bar soaps ($5)

-2 deodorants ($8)

-1 lotion ($6)

-3 tubes of toothpaste ($10)

-1 toothbrush ($4)

-1 chapstick ($4)

-2 mascaras ($25)

-4 packages of disposable heating pads ($20)

-2 candy bars ($1.50)

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

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

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

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

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

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

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!

Makeup That's Good for You!

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.