On Disordered Eating

I'd like to see the American who hasn't somehow been affected by disordered eating. According to the
Diagnostic and Statistical Manual of Mental Disorders, AKA DSM, disordered eating is defined as, "a wide range of irregular eating behaviors that do not warrant a diagnosis of a specific eating disorder."

A specific eating disorder would be something like anorexia or bulimia where the afflicted (generally a female) becomes so obsessed with their body image they forgo the intended purpose of eating (nutrition) in favor of becoming thin. Of course that's just a short definition. There's many layers to either anorexia or overeating. I've seen both the gleam of joy in an overeater's eyes when they indulge in a guilty pleasure and I've been the person pleading with an anorexic to eat so they'll finally lactate and be able to feed their baby.

Seeing disordered eating has been so common in my life, that I was always the odd one who didn't have a weight problem, who didn't overeat (or undereat).

But the nutrition I gave myself was neither normal nor particularly healthy. I went weeks before coming down with a cyclical vomiting episode eating very little. When I recovered I usually binged on food because I had lost so much weight during the episode. After I was diagnosed and began learning about my illness and how to take care of myself I stopped losing 20 lbs every 4 months or so. My body seriously didn't know what to do with itself. On top of that I stopped feeling hungry. On top of that, my body that had been so disordered from my illness that it hung on to every calorie I did manage to consume. So what did I do? I started freak workouts at the gym. It wasn't until I began working out insanely that I could eat like a normal person. Exercise seemed to do more for my body though than make me hungry. I noticed that I felt better than I had ever in my previous life. For the first time I experienced joy in an activity. Anything I ever did before my diagnoses I always had in the back of my mind that I might do something to cause an episode. There is very little out there for people afflicted with this strange illness. I am studying the health sciences in an attempt to heal my body and prevent others from going through what I did.

In the nutrition class that I recently took, the mitochondria was referenced. Through my own research of this illness, I have learned that many scientists attribute dysfunctional mitochondria as being the root cause of this disease. The mitochondria are the nucleus of every cell but the red blood cells. I explain the mitochondria of being like a car battery and you can read about it here. I also found out that aerobic exercise has been found to increase the amount of mitochondria in the muscles as well as increase the effectiveness of it. I'm not a scientist, I'm a journalist. I can't prove with my body's improvement that cyclical vomiting syndrome is caused by defective mitochondria. All I know right now is that I feel wonderful.

When it comes to disordered eating, I feel like my CVS protected me from becoming disordered in eating. Sure, I've had my battles with food. Specifically I was very upset as eating as healthy as I had the last decade only to find out it was healthy foods like wheat and legumes that were actually contributing to my illness.

I eat a balanced diet. It's just nutrition. For people who are disordered because of trauma or because they associate eating with feelings of joy or forbidden pleasure, know that I feel your pain. Although, I never have associated food with anything positive, I've thought of it so negatively that I get disordered eating. I had to come to terms that I needed to eat to live. So I understand.

All In A Name

One of William Shakespeare's most frequently uttered quotes, "A rose by any other name would sound as sweet," spoken by the love-struck Juliette in reference to her beau Romeo and his unfortunate last name, makes me think of the name of my own disease Cyclic Vomiting Syndrome. After my diagnoses three years ago this August, I accepted that people would have to know (and picture) that I puke a lot.

I'm not particularly keen on people visualizing me during an episode. And visualize me puking my brains out is something I'm pretty sure happens.

When I worked at summer camps I received quite possibly the best advice when it came to taking care of kids. Don't ever say don't. The reason you don't, is that whenever you say don't, that puts into the recipient of the don't the idea to "do." Still confused? OK. Don't picture pink fluffy elephants. See, you just pictured a pink elephant.

Therefore, when I inform people I have cyclic vomiting syndrome. I know. I just know. They are visualizing me puke. Imagine if you had a disease called Spinning Explosive Diarrhea. You had to tell everyone that you had epic spells of diarrhea. That would kind of suck, huh?

Perhaps I'm too sensitive. When I was pregnant I didn't even tell anyone until I was eight months along.  I couldn't handle people visualizing the biological means that causes someone to get pregnant. Everyone just thought I was getting weirdly fat.

Names. They are important. We are given a name when we are born. We name our pets. We name streams. We name oceans. Everything we as humans see or touch has a name.  I spent three decades not really understanding I had a condition that had a name. I thought I was more prone than others at getting the stomach flu. I knew that most people weren't hospitalized for the flu. I knew that most people didn't vomit six times per hour. I knew there was something different about my illness. So I gave my illness a name. I called it The Evil Monkey Flu From Hell. Long name, huh? Still, a little more poetic than Cyclic Vomiting Syndrome.

For those of us suffering with this illness and suffering with telling people the name of your illness, hang in there. Those of us who regularly work with kids give up saying "don't" for one day and try instead giving them constructive things to do. You might be surprised. Or you might not. Kids are pretty unpredictable--especially that stubborn rebellious Juliette.  I mean, her entire family told her do not date Romeo. Look what she did. And what happened?

Cannabis and I are NOT Lovers

I always get a load of feedback when I say anything about marijuana. Cannabis really seems to be as polarizing as abortion, political parties, or child rearing. I came into this writing business with a ready-made resentful jelly person just waiting in the wings for the opportunity to find something to criticize me about. Thus, whenever I write about how I DO NOT use marijuana it somehow turns into me using marijuana. Vice versa, people who are regular users completely dismiss me as a 420 hater. Friends, I am neither. The only opinion I have about cannabis is that it's not some magic cure-all. It comes with its own list of side effects. Plus, people call it a natural wonder without considering that a ton of pesticides are used to grow it, and the pesticide use is still unregulated by the federal government--being its usage is still federally illegal.

Before Washington (my stomping ground) State legalized marijuana's recreational usage in 2012 I was always screened at the beginning of my frequent flyer Emergency Room visits as a drug seeker. Yeah it was kind of a pain to have to go through, but after the initial screening I was always treated for my symptoms despite no medical professional being able to diagnose me. And because I WASN'T a drug seeker. At all. I occasionally drink Cabernet. That's it. My body is too compromised to handle anything else. If you're still trying to find something to bring me down to size, humble me, give me what I deserve take this link to one of my favorite songs that I'm guessing you wont understand. Yes, she does mention rolling joints. But she also says it doesn't matter if you don't. I'm someone who don't. I'm pretty straight and narrow. And when my straight and narrow gets a little too straight I take a 90 degree turn and follow it straight. And BTW, nothing is more humbling than spending hours in the Emergency Room being asked if you use drugs and being accused of getting punched in the gut all the while vomiting every 15 minutes in front of a staff of medical professionals wondering if you're only in the E.R. to get some drugs.

Anyway, after marijuana was legalized in Washington State, things in the Emergency Room changed. I started getting asked specifically if I used marijuana. Soon after its legalization I was officially diagnosed as having a condition known as cyclic vomiting syndrome. From then on, whenever I visited the E.R. medical staff would confuse my illness with something called cannabis hyperemisis. Because my illness is so rare and still so unknown, medical professionals simply see more patients with the cannabis hyperemisis and patients who have it aren't afraid anymore to say that they are regular users of marijuana.  Great for them, great for the MPs treating them, not so good for little ol' me.

Even the article in High Times states that ceasing use of marijuana will stop CHS. If you're a regular user of marijuana and are some how still reading this blog, know this: CHS usually inflicts those that use marijuana daily. One study stated that because marijuana has a half life that builds in the system it stays in the intestines and eventually causes stomach pain and CHS.

If you're still reading MJ users, know that regular use of cannabis has side effects. Painful ones. I wouldn't wish my symptoms on ISIS, and there are ways to prevent this from occurring that does not include giving up the now legal wonder drug.

Drinking lots of fluids and regular exercise has been found to help prevent CHS. If that doesn't work give giving up the MJ a chance. C'Mon. You know you want to try it.

With CoQ10

I really didn't know what to expect when I finally went to see a gastroenterologist nearly three years ago. Because of my symptom history I assumed I had some form of celiac disease. I had already cut out wheat from my diet, and was existing under the idea that I had celiac disease. I live in an agricultural area that predominantly grows wheat and have known ancestral farmers with it. My gastroenterologist said that it was unlikely I had celiac disease, however, and my symptoms seemed more like a rare disease called cyclic vomiting syndrome. The disease is so rare in fact it's frequently listed among the most rare diseases of today.

He then told me there was nothing he could do. There was no test for it, no medicine or treatment. The only thing I could do was try Coenzyme Q10.

I'm not someone who takes vitamins on a regular basis. I have, however, taken vitamins in an attempt to maintain my health--to no avail. See, for years I thought I had a weak immune system that caused me to contract the stomach flu more easily and more severe than others. This time when I took Coenzyme Q10 something was different though. My body felt different.

Since I've been on this vitamin, I've only been symptomatic once in the last three years. That's huge considering I used to have episodes of severe vomiting at least three times per year.

So how and why does this enzyme work? As a journalist I can't help but be curious and even a tad skeptical about taking a pill and suddenly being cured.

Because of my questions about my health and my illness, I've begun taking classes that may lead to a degree in health in addition to my degree in journalism. My latest class nutrition had a lot to say about this enzyme.

Although there is no cure for cyclic vomiting syndrome, it is being studied. Many scientists are correlating cvs with a dysfunction in the mitochondria. Mitochondria are considered the powerhouse to the cells in the body and are in every cell but the red blood cells.

I compare mitochondria to that of a car battery. When you start a car it needs the energy stored in the battery. If its faulty, unless you have a hill and drive a stick, you can't really start your car. If the battery is a tad tricky you could end up with all sorts of car problems. Long story short: keep your car battery healthy.

My mitochondria that transfer energy to the cells of the body don't work like they should. People with mitochondria dysfunction end up with all sorts of health issues--including gastrointestinal and cyclic vomiting.

So how does CoQ10 factor in?

The enzyme CoQ10 is already made in the body. It is also found in a number of foods--especially organ meats. It works in the ATP energy system that makes our bodies function. The same system that houses the mitochondria i.e. our

body's car battery.

One of the medical professionals I see even said that issues with the body's mitochondria is something a lot of people are suffering from without even realizing it.

As for ingesting vitamins, most experts are saying nowadays that a normal healthy person doesn't need supplementation. They also advocate eating a healthy diet as a way to ward of disease and maintain good health.

My body doesn't work quite right. That's why I take Co-Q10, L-Carnitine and Creatine. If and when they find a cure for CVS I'll probably stop supplementing. Right now, that's all I can really do. And it seems to be working.

Charles Darwin and I are Best Buds

I'll begin by saying I would NEVER beat a dead horse. I would rent a big truck and probably donate the carcass to some sort of nearby sanctuary that houses and feeds wild cats like Cat Tales. That said, I'll say again that people and I have never really seen eye-to-eye. I try to not make eye contact with them at all actually. 

I could go on a huge tangent on why I don't really understand people, but I have stuff to do today like muck out the chicken coop or something.

I think maybe I just don't get First World Problems. I do, however, understand Charles Darwin who's been dead for more than 130 years. People have talked about Charles Darwin's mysterious illness for decades. Much speculation about what it actually was has included chronic sea sickness and Chagas disease, which he supposedly got from a bug bite on one of his voyages.  Although, many reports say that he had neither, he actually had some sort of strange chronic disease.

Charles Darwin spent a good portion of his adult life very ill. His symptoms included extreme nausea and vomiting that would last for days then he would go months without any sign of illness. Those same symptoms are the same as those associated with cyclic vomiting syndrome. I was diagnosed with this disease nearly three years ago.

I have so much pity for him. So much so, that if I had the opportunity to travel back in time it would likely be to tell him he has a disease that can possibly be helped by enzyme therapy and exercise. My question is if that would even help? His scientific achievements were so vast, but medicine was surely not like it is today. Plus, had Darwin not suffered would he have worked so hard?

And that's why I see so much in common with the legend. In his journals he describes the miserable illness that plagued him for days--even months--on end.  He even lost a daughter to a strange disease, some say tuberculosis but it's really unknown. Today, his decedents mitochondria is being tested to find out if he had cyclic vomiting syndrome or some sort of mitochondrial dysfunction.

Darwin also describes how because of his illness he grew to expect its return and worked zealously when he was well. If Darwin didn't have that drive, would he have made all of his discoveries and changed the world?

That's where I sit with my illness. Had I not had this mysterious disease for three decades, maybe I wouldn't be who I am today?

But the same goes for why I really don't understand people and their first world complaints. I remember when I first took out my main allergen wheat for one day. A deep pain in my stomach that I was so used to that I didn't even know it was there went away. Shortly after the pain abated I thought, "Oh my gosh this is how a healthy person's stomach feels! This is wonderful! Healthy people have nothing to complain about!"

So that last sentence is incorrect. Health is everything, but its not everything...I guess.
I am at peace with how my young life was plagued by a strange disease. When it comes to people, however, let's just say I'm working on it.

The Blessing That Is My Chronic Illness

When I was in my mid-twenties I had a very poignant conversation with my fiance, now my husband. “You know I can’t have kids, right? You know I probably wont live much past 30?” Anyone who has ever been in their mid-twenties probably already knows that 30 sounds really far away and really old. I’m assuming that that’s likely the reason he kind of brushed off my commentary about my mysterious ailment.
Now nearing my mid-30s I’m sometimes astounded that I am still here. More surprised then I was at having a kid and not dying by age 30. Not nearly as shocked as I was shortly after turning 30 that I had an actual disease with a name and not just some vile and awkward thing I had to deal with three times per year. I was diagnosed with cyclical vomiting syndrome nearly three years ago. That diagnoses changed my life.
This whole blog is dedicated to my illness, so the fact that a simple diagnoses changed my life is a bit of an understatement. Being diagnosed turned me into a gosh dang superhero!
I’ve had this disease as long as I’ve had memory. It became a part of my very existence. It’s like I spent my childhood, adolescence and twenties carrying an elephant. For imagery sake, let’s say the elephant was an adorable baby during my childhood and nearly full-grown in my twenties. I turned 30 and the elephant jumped off my back and  rejoined its herd. How did that leave me? It left me with a rock hard back is what it did.
There is no cure for either cyclical vomiting syndrome or mitochondrial disease. But there are people all over the world who’ve been diagnosed and now know how to manage their disease. I’m one of those lucky people. The heavy load I’ve carried my entire life has been lifted.
Because my young life had added difficulty, I simply learned how to do life differently. It’s a difference that now fills me with joy and my life habits are so beneficial to me. In short, my illness was a blessing. The many blessings of it are listed below.

1. My Bills Are Always Paid Three Months in Advance

I never knew when I’d end up bedridden or in the hospital. All I ever knew was that it was inevitable. My bills were always paid way in advance. I’ve always had a savings account to pay for any deductible I may acquire.
2. I Achieved All My Goals
Three years into my diagnoses sans fear that my body will fail me, I still don’t understand what dreams are. I never had any. I can say now that my dream has always been to go a year without nearly puking to death. I’ve done that. My dream came true. That said, I did grow up in a generation that promised hard work would lead to the life of your dreams and that with enough sweat equity I could have anything I wanted. Knowing as an adult that the above teaching is complete b.s., I still heard it repeatedly and it taught me to make goals. I made plenty of them. They were small goals like going here or accomplishing this, ect… and I always reached my goal…right before I landed in the emergency room that is.
3. I Don’t Care If People Don’t Like Me
If someone isn’t treating me how I think I should be treated I walk away from them so fast. I didn’t ask to be here. I didn’t ask to spend a lot of my childhood in a room reading books because I was so sickly I couldn’t keep up with other kids. It’s not my fault I didn’t get to develop like other people. I have a terroir all my own. I don’t do anything to anyone. I help people more than most. Sure, I see the world a bit different. But I wouldn’t want it any other way. That said, I’m not proud of how little I understand passive communication. I’ve lost dozens of friends over this. When this happens I call it Sheldon Coopering. Or when I accidentally Sheldon Coopered someone. One example I would use would be that I’ve been in situations where someone’s said, “Man I’m thirsty.” My response will usually be, “Oh that sucks.” But if someone says to me, “Hey could you get me a drink of water?” I’ll always jump up to get it. I don’t understand the cause of this. It seems gender-biased, but I don’t really have much insight on whether women are expected to understand passive communication better than men. All I know is I’ve ticked off a lot of people because I don’t speak passive. But I always brush it off. Again, I didn’t ask to be here or to try and interpret that stuff. I’d much rather be soaking up the sun anyway.
4. I Don’t Waste Time Not Liking People
Although I do have a preference for responsible dog lovers-especially flat-coat owners!- I don’t waste a minute disliking someone. Honestly, I don’t understand why someone “likes” or “dislikes” a person. My character assertions revolve around if I think the person is a sociopath, a narcissist, or someone who is punitive towards others or animals in anyway. If you’re none of those, then we’re good. I’ve had people look right at me and tell me they didn’t like me because of the shape of my nose. I’ve also had people tell me they didn’t like me because I reminded them of the cheerleaders they went to high school with. The ones they hated (anyone I went to high school with, lets all share a collective chuckle.) One time I even overheard a person explaining to someone else how they didn’t like me. This was the conversation: A) Yeah I really don’t like her. B) But why? She seems so nice. A) Yeah, I don’t know. I just don’t.
Yeah, I totally don’t get that stuff. It seems like mental illness to me. It seems pretty common though. I thought this Time article summed up my feelings on this subject pretty well–especially the last sentence. For the record I am not Autistic nor do I have Asbergers. I actually had a test done. People who are either cannot understand wit. I not only understand wit, it’s kinda my life. I’m just some lady with a high I.Q who spent her childhood in a room with books. I’m like Nell but with a high I.Q.
5. I Have A High I.Q.
Again, nothing I asked for. In fact, I’ve referred to my high I.Q. as “The Curse”. If I had been able to choose my childhood it would have been right down the middle, not of such a sickly constitution I ended up a well-read adult who constantly calls out other people’s b.s. just by happenstance. Another way I don’t keep friends.
6. I Get To Be Simple
I still can’t believe I get to feel like other people do. I’m no longer carrying a heavy elephant that makes every day harder. I no longer have to spend every day anxious,  not anxious about other people or anything I’m doing, but anxious that my body will trip over itself before I have a chance to reach my goal. Now I get to still be sorta young with a healthy body that most people in their 20s and 30s take for granted. I get to be a vibrant part of my community and my world. I have been given the wisdom of empathy to the suffering of others, yet I’m still young enough to be of help. I’m getting to help others maintain their health and have longevity. I get to be salt-of-the-Earth. For that I am blessed.

Of Prince and Creatine

Today when Jett and I were out for our morning run, the rain came down. Perhaps my vision was a bit off today, but I swear the rain had a purplish tint to it. Prince, who passed away yesterday at the age of 57, will be deeply missed. I graduated high school in ’99, and the song 1999 (Party Like It’s 1999) reminds me every time of that magnificent summer I had post high school and just before the doors of college closed behind me. I’ll never forget the freedom of ’99, with the future yet written and my past adolescence behind me. It really is a loss.  The master behind the iconic song Purple Rain has crossed the blue horizon.
I normally run extremely slow, but seeing the purplish rain come from the sky and hit the green hills that surround my running spot caused me to take an even slower pace and even pause.
Yesterday at my running club, I was of course one of the slowest runners on the pavement. When I attended grade school this caused me a lot of embarrassment in gym class. Now, I kind of just accept it as part of my cyclical vomiting syndrome and mitochondria dysfunction. As a kid sticking out in any way is not fun, now I just put one foot in front of the other and try to advance my pace.
In a recent class I took on nutrition I learned of the relationship with creatine and the ATP energy system. I also learned about the relationship between healthy mitochondria and exercise.
The mitochondria are in all the cells of the body but the red blood cells. If for some reason the mitochondria’s dysfunction is compromised that can lead to all sorts of health issues–including the disease I have, cyclical vomiting syndrome. Exercise not only increases the amount of mitochondria in skeletal muscle, but it increases it’s functionality.
Creatine benefits the ATP energy system, but it does it with anaerobic exercise, short duration/high intensity exercise like body building. That’s why body builders use it, fyi.
I, for a very short period in college dated a body builder. That’s all he talked about. All I talked about was X-Files. It was a high intensity/ short duration relationship where neither of us really ever listened to each other. In case you wanted to know what it was like to date me in college. Here is a video that completely depicts a typical dating scenario for me. I’ve attempted to find out if, like Abed, I have Aspergers. I’ve always been informed that no I don’t have it. I’m currently studying if Maslow’s Hierarchy of Needs has anything to do with me, or if I’m just a big fan of John Green.
Regardless, I’ve added creatine to my diet. Fingers crossed that this aids me in becoming a decent runner. I did run today. I ran pretty good. I ran in the purple rain.