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.

Post-Surgical Cases of POTS: Could Anesthesia be to Blame?

September 10, 2007 was the day my life changed for the worse. I am not too good at sugar-coating my story and saying that chronic illness has made me more resilient and empathetic. Though it has, I have always had a good amount of empathy and have been a kind person at heart. I am still not sure why this all had to happen to me or any of the other wonderful people I've met along this journey. I certainly don't think any of us deserve this or would wish this illness upon our worst enemy.

The day I had my wisdom teeth pulled in a "routine emergency extraction," due to an infected wisdom tooth on the lower left quadrant of my mouth, I was blissfully unaware of my hypermobile joints from Ehlers-Danlos Syndrome, but I was well-aware of my extreme sensitivity to meds. Before that fateful day the only meds I had ever taken were Tylenol and antibiotics (many of which I am allergic to). My mom and I both made sure to inform the oral surgeon about my multiple antibiotic allergies and that I did not want to take a bunch of strong, weird drugs during or after the surgery. In fact, I didn't even want to be knocked out for the surgery. I was terrified of being put under any kind of sedation and adamantly against it. I asked the doctor if they could simply numb me up good with a local anesthetic and let me listen to my iPod and he replied, "Absolutely not. Everyone is put under into a very light sleep."

He also warned me that I would probably end up with TMJ after the surgery. At the time I had no idea what TMJ was or the drastic negative implications those three letters would have on my life. So I signed my rights and life away on the dotted line and hoped they could cure the infection by pulling the tooth. The oral surgeon also insisted on pulling the other three at the same time (although they were not even infected). I am not sure if this was for his convenience (and profit) or mine...

The American Dental Association no longer recommends the prophylactic removal of wisdom teeth, whether they are impacted or not, because they cannot justify the risks of an often unnecessary surgical procedure. Wisdom teeth removal has nearly become a right of passage in American culture and most people come through it just fine. However, after swapping stories with several other POTS patients these past few years, we were all stunned to find that many of us share a commonality: our symptoms began after having our wisdom teeth pulled. Purely coincidental? Possibly. Purely uncanny? Indeed. Purely logical? Maybe...

Flash back to that afternoon in September '07. As I was leaned back in the chair being prepped for oral surgery it never dawned on me to ask what exactly it was that they were injecting into my arm, but seconds before I was knocked out I was still cognizant enough to ask the surgeon where my anesthesiologist was... His reply: "I will be your anesthesiologist." That made me uneasy (for a few seconds). For charging nearly four grand to pull a few teeth you would think he could have afforded an anesthesiologist. My hesitance quickly subsided with the induced slumber and the next thing I knew I awoke in the same chair about an hour later with a mouth full of gauze. Feeling no pain, I was driven home by family shortly thereafter and optimistic that my jaw pain would soon resolve for good.

During the next few days of downtime I started feeling markedly sicker. My heart was pounding and I was too weak to move myself from one chair to the other in the living room. I was even having a hard time breathing. Several subsequent ER visits ensued and the doctors didn't find much wrong except mild dehydration and resting tachycardia. I had never experienced any heart problems in my life I was told it was probably just stress and to consume more fluids and give myself more time to recover from the wisdom teeth surgery. A few more months of this torture ensued and my PCP finally referred me to a cardiologist after listening to my heart with a stethoscope. The cardiologist then referred me to an electrophysiologist who was immediately concerned about autonomic dysfunction, what I would later learn to be a debilitating condition called POTS.

To make matters worse in the months following the wisdom teeth extraction, I was taking exorbitant amounts of Tylenol and ibuprofen and wearing a thick splint in my mouth to cope with the intense muscle spasm pain that was happening on the sides and back of my head and neck. My jaw joints were making all sorts of awful noises and I couldn't open my mouth wide enough to eat many foods. The jaw specialist I saw advised me not to talk or chew and prescribed a muscle relaxant which did very little to alleviate the pain either. I endured countless sleepless nights, one particularly painful stretch I didn't get a wink of sleep for four days straight. I was a walking zombie in unbearable pain no one could seem to fix, and the resultant lack of sleep certainly wasn't making my tachycardia any better. I was driving my family nuts and I couldn't keep up with school at all. Not only were my thoughts clouded, I was too weak to do anything and I was scared that I was dying since no one could seem to figure this mysterious illness out.

It was my senior year of college and I struggled to make it to class. I had to be driven from building to building on my small college campus because I was too weak to walk from the racing heart. I saw countless specialists: a cardiologist, an electrophysiologist, a pulmonologist, an endocrinologist, a TMJ specialist, a neurologist, a sleep medicine specialist, a massage therapist, an acupuncturist and finally a chiropractor where I did finally experience some relief from the head and neck pain through atlas adjustments. The electrophysiologist put me on beta blockers which controlled my heart rate but did not make me feel much better.

Until a gastroenterologist tried to schedule me for an endoscopy which would have required conscious sedation (Fentanyl and Versed, administered intravenously) earlier this year, I had never again worried about being knocked out. But then I remembered that my wisdom teeth surgery didn't go so well and it finally dawned on me that I should finally get the records from my wisdom teeth surgery back in 2007. After all, I have all my other old medical records now, so why not my "dental" records?

Obtaining them proved to be a bit of a challenge. Although the oral surgeon who operated on me is unfortunately still in business, the office lady was very reluctant to release my records to me. She wanted to know exactly what I wanted and why I wanted them. I told her I wanted everything in my file for my personal records, that I was simply collecting everything from every doctor or dentist I had ever seen. About a week later my records were ready and I paid my $13 fee in exchange for information that shocked and appalled me. Upon looking at the surgeon's handwritten records, I discovered that I was administered what he referred to as a "mild sedative" consisting of Propofol (that's right, the Michael Jackson death drug that should only be administered in hospitals), Reglan (a dangerous prokinetic drug with horrible side effects including autonomic nervous system problems), Fentanyl (a short-acting but powerful painkiller), Versed (milk of amnesia) and Halcion (a sedative). You counted right. That's a cocktail of five different meds administered intravenously. I would not consider any of these drugs to be "mild" or "light." Maybe mild to a crack addict. Not to someone who was a medication virgin.

To my other POTS friends who have had their wisdom teeth pulled: I see an obvious correlation between wisdom teeth extraction and TMJ/headaches, but do you think there is a correlation between POTS and whatever sedation you were given during surgery rather than the trauma of the surgery itself? Or perhaps coupled with the surgical trauma? I strongly suspect there is some sort of link here related specifically to the drugs I was given that day. Problem is, which drug could have been the culprit? Reglan and Propofol are the most likely suspects, but now I may never know which (if any) is to blame. I encourage you to obtain your medical records from wisdom teeth extractions and find out what kind of sedation you were given. The same applies to any other surgical procedures where sedation was administered.

The other day my mom informed me that our neighbor's daughter had an infected wisdom tooth and that she was scheduled to have her's pulled by the same surgeon I had. In a BAD TMJ flareup myself, I cried and felt an overwhelming sense of fear come over me for the young seventeen-year-old girl who is roughly the same height and weight that I am. My mom and I were both compelled to speak up and warn them about this doctor and his practices. After hearing my story, her dad took her to a different surgeon who only removed the one infected tooth under local anesthetic, leaving the other three teeth (and her health!) in tact. Luckily she made it through the procedure and recovery period just fine and I am hoping that by speaking up I may have helped save her from ending up like I did.

The worst part of all of this still is, I knew that I was totally fine and healthy until the day I had my wisdom teeth pulled. I am angry at the oral surgeon who ruined my life, although I realize it was unintentional. He has no clue what happened to me after his surgery. I have half a mind to march into his office, give him my sob story and demand that he modify his risky anesthetic practices. At this point an apology wouldn't bring me much satisfaction. I want him to change his potentially risky anesthesia practices for the sake of his future patients.

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?

Keep Calm and Defy Gravity

The Human Body with POTS

People Suck Sometimes

Whether it's my able-bodied uncle giving me his idea of a "pep talk" by dispensing trite advice: "you are a smart girl, you can do anything you put your mind to, and you wouldn't want to live life from a chair!" (As if anybody has a choice or really aspires to live their life from a chair in the first place...) Ah, the mind over matter speech. If only it were that simple... If only my mind were able to cure my physical illness...

Or my therapist saying that having to go to the doctor every week is "no kind of life," I have come to realize recently that even seemingly well-intentioned people sure do pass judgment on others a lot. I am probably even guilty of that myself every once in awhile. It's one thing to have a thought pop into your head and keep it to yourself but quite another to impose your potentially offensive point of view onto someone else. Yet I am sure that neither one of these people meant to offend me. Which hearkens back to the same question I have asked myself before: am I just overly-sensitive? Or does everyone just need to take care to be more politically correct when it comes to their interactions with the chronically ill?

My skin cannot get much thicker. I am sensitive by nature but have learned to let a lot of things just "roll off" these past few years that would have previously really upset me. Today's discovery of the Facebook group openly discriminating against the disabled really left me reeling. It is amazing to me how people can get away with hate speech like that at this time in history. The following cartoon was posted on their group page and I found myself studying it for quite awhile, not able to uncover a single ounce of humor in it:



I certainly do not find it amusing and do not appreciate being given the label "pampered disabled." If the cartoonist's idea of being "pampered" is not making enough to live on, not being able to travel, not being able to be physically active and not being able to lead normal lives, then call us "pampered." Surely we must be "pampered" by being granted access to basic services through closer parking spaces. Surely that evens the score and levels the playing field among the able-bodied and the disabled. I believe in free speech as much as the next person, but I do not believe in poking fun at or disrespecting people in a public forum, especially the most marginalized groups of society, or "mutants" as a particularly ignorant and mean-spirited member of the Facebook group referred to all disabled people as. It is disgusting to me how sinister and overtly hateful some people can be. Days like today I am even more thankful to have compassionate friends on my side who are genuinely good people. You know who you are.

Hateful, Hurtful Words NEED to Stop!

I'm soooooooooooo sick of sociopathic bullies like the lady who wrote the following on her Facebook group page entitled, 'group to revoke handicapped parking permits:'

"Stop treating people differently based on their physical capabilities, that's what they say, but it's all lipservice! As soon as one of those handicapped people wants to park a car they don't want to be treated 'like everybody else' anymore. Well, here at the group to revoke handicapped parking permits we say: 'May every man, woman, child, and retard, be treated equally.'



Do they really need it? If they're so messed up they can't drive, then why doesn't the person they're with just drop them off and find a f#@*&!^ spot? If they are able to drive, but use a wheelchair then there's absolutely no need for a close spot- they're on wheels, a conveyance that's gonna get them there easily and faster anyway. Now for those who are just so weak and tired that they aren't able to drive and have too much pride to get in a wheel chair- I say stay home! You've probably got somebody catering to your every need there, too! Why do you feel you need to get that kind of attention when you leave the house too?
Now there is new category of 'handicapped' people: the grossly, morbidly, obese. Now with this I vehemently disagree. Isn't it possible that if you parked further out and walked to your destination you would burn a few calories and lose some weight, thereby negating the need for the 'fatticapped' parking in the first place?



FIGHT DISCRIMINATION!


Actions to take to show your support:

1- get out there and send in a photograph of yourself 'illegally' parking in a handicapped spot, then post it accordingly;

2- steal a handicapped placard from a car;

3- remove any 'handicapped parking only' sign you possibly can; and, finally,

4- flip off handicapped people in the name of equality!"

Let's deconstruct her argument for a minute, shall we? According to this woman's logic the handicapped don't deserve to have a place in society or to even show our faces out in public at a grocery store. Sociopaths like her embody everything that's wrong with the world today. It was all I could do not to stoop to her level and call her hurtful names. Instead I sent her a message with a link to my blog post about my personal experience using a handicapped parking sticker. Maybe it will inspire her to put herself in someone else's shoes for a change...

The Best Non-Dairy Frozen Dessert Ever!

And the winner goes to: Trader Joe's Soy Creamy in Cherry Chocolate Chip! This stuff is delectable and dangerously addictive. I have managed to gain back at least half of my post-appendectomy weight loss thanks to bowls and bowls of this lovely desert. If I didn't know it was soy, I honestly couldn't tell the difference. The texture and consistency is nearly identical and I actually prefer it to ice cream! I highly recommend this stuff to anyone who is lactose-intolerant, vegan, or anyone with taste buds for that matter!

Top Ten Trader Joe's Products!

Although my tummy has given me considerable trouble the last few months both before and after the emergency appendectomy, I can still find things to eat at Trader Joes. The other evening it dawned on me that I could barely survive without a Trader Joes nearby. For one thing, it is much smaller than the Safeways and Albertsons of the world and therefore more manageable and less of an energy drain to shop there. Our local Trader Joes also has benches in the store even though it is small. Much appreciated during all those potsy shopping trips.

If I go at night the lines are typically short and the aisles uncrowded so I can read labels if need be. I also like Trader Joes because their products are typically less processed and contain more natural ingredients with names I can actually pronounce. They also have a nice selection of organic products at competitive prices. It is a great place to shop if you have issues with food allergies or intolerances. I am allergic to sulphur dioxide, often used to preserve dried fruits with. Trader Joe's products are clearly marked with the allergens so I don't have to hunt through the whole ingredient list to figure out if I may be allergic to something or not.

Here's a list of my favorite Trader Joes products, in no particular order. If you try a product you don't like from Trader Joes, they will gladly take it back, no questions asked. So your purchases are essentially risk free. A nice way to try new things without having to worry about wasting money on something you may not like. That said, you wont need to return any of the items on my list! I recommend the following without reservation:

All I Can Do is Cry

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. A local murder suspect whose wife has been a missing person for months 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 those 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.