How Coq10 Changed My Life

Going To The Emergency Room Dressed As An Inmate

On my way out I heard a man say, "Her shirt says State Inmate on it." I figured he was referencing me, so I turned around. I saw he was standing outside an room at the e.r. I was at. He looked like a guard. My guess is he was guarding an actual inmate. I was simply in an inmate get up. I was supposed to have gone dressed up to a Halloween party. I missed it though. I ended up having a cvs episode and going to the emergency room.

https://youtu.be/9ovBfCnp-Dc

My doctor laughed about my handcuffs before he gave the order to the nurse to insert an Iv. Into me and give me intravenous Zofran and Benadryl.

Sure, I missed a really awesome party. Sure, I missed going dressed up. However, my emergency room visit was so wonderful.

I walked right in and told them I have cvs. They handed me a puke bag and got me into a bed right away.

In my experience, hospital beds are super comfy at first. They don't start getting uncomfortable until you're feeling better. That way you'll want to leave. I swear there's a science to it.

I remember earlier that day thinking I was coming down with an episode. I prayed that I wouldn't get one. It was then I heard a voice say, "You never know who you will meet when you go there."

And I did meet someone. I met an amazing nurse who had his own journey to wellness. Thank you so much for helping me.

To this day, I still go to the hospital when I start having an episode. However, I only have an episode occasionally. I am so grateful for this.

Happy Halloween :)

My Fool-Proof Stay-Out-Of-The-Emergency-Room Diet That Incidentally Did Not Work BTW

One example of a meal I eat. Cottage cheese, carrots, slice of watermelon, and sliced peaches. I eat mainly whole foods that provide simple good nutrition.

My disease Cyclic Vomiting Syndrome took years, no decades

to diagnose. With Cyclic Vomiting Syndrome, a sufferer experiences extreme bouts of vomiting that last days if not weeks. Usually, a sufferer of CVS will have to go to the Emergency Room to have trained medical personnel help stop the symptoms.

A person with CVS will experience this several times per year. In addition to the necessity of medical intervention, the disease itself is still relatively unknown to nurses and doctors. Plus, the disease often gets misdiagnosed. Before I started going to the Emergency Room my symptoms were always cared for by my mother who is a retired nurse. When my symptoms became so bad, I finally began seeking answers to what I thought were extreme stomach flus or food poisoning.

At first I was misdiagnosed with celiac disease, until finally I saw a gastroenterologist who said I had CVS. Before either diagnosis I thought I had a weak immune system. It seemed logical to me that I live as healthy lifestyle as I could. For sure I was not perfect. I had plenty of indulgences. For the most part though, I ate organic plant-based foods and was mostly vegetarian or I mainly ate fish as my protein source. I read everything I could on what science defined as a healthy diet. I followed it as best I could. For some reason though, my stomach flus got more frequent. I noticed the more foods like lentils and heavy grained wheat bread I ate the more food got vomited into the toilet.

When my daughter was about 6 months old I came down with an episode hours after making a dinner of homemade butternut squash soup and biscuits. Having made everything from scratch, I was able to narrow down what the agitating food might have been, were that the cause of my symptoms the last 30 years. That food happened to be wheat. For the next 24 hours I went off wheat. Almost immediately I noticed changes to my body. Stomach pain I didn’t even realize I had abated. For the next week all I ate were steak and M&Ms. My adult acne disappeared, my stomach continued improving, even my hair felt less greasy and more manageable. Not someone who generally follows trends, overnight I became one of those gluten haters.

 Months followed no wheat and no sudden CVS symptoms. Still though, occasionally when the norovirus came around I would catch it and my stomach flu sent me to the hospital. I still had cyclical vomiting, although greatly lessened. This continued until my gastroenterologist diagnosed me with a disorder, not a weak immune system. Following a healthy diet, for me, is as easy as pie. Before diagnosis healthy eating was my mantra and I still kept getting sicker. Now I eat a very simple healthy whole foods diet. I eat eggs laid by my chickens with bacon and fruit juice for breakfast. I eat salads without croutons for lunch topped with grilled chicken. I have a small steak with a side of potato and a green vegetable like asparagus for dinner. Milk still bothers my stomach as well as most beans. Wheat is an absolute no. My indulgence: Cheetos. Do I binge. Nope. Do I eat them. Enjoy their crunch. Sure Do. But mainly I focus on eating a well-balanced plant-based diet with about a fist-sized protein per meal like scrambled eggs, chicken breast, or small steak. I also take enzymes that aide in the ATP energy system and the mitochondria like C0-Q10, L-Carnitine, Creatine.

 My diet is so simple. Eating healthy isn’t a mountain. It’s easy. Anyone can do it. It’s one of those things that looks difficult, but is really a piece of cake.

Traveling While Chronically Ill

 Frequent flyers like me don't travel very far.

That is, frequent flyers of the Emergency Room, like me.

Before I knew I had a chronic incurable disease called Cyclic Vomiting Syndrome, I lived in a pretty scary world.

I always wanted to travel the world, you see, but I was too scared to go very far away from the Emergency Room I was used to.

My disease is one of the most confusing and rare diseases of today, and is often misdiagnosed. If you're into Grey's Anatomy, Season 9 Episode 6's subplot is all about cyclical vomiting.

Spoiler Alert!
At the end of the episode, the doctors prescribe the patient Sumatriptan and the patient goes on his merry way having been treated, finally, for his illness. He leaves the Emergency Room with his life improved. But that's not really the story.

The story is how this man was labeled as a drug seeker, then finally the doctors realized the patient had a real illness they had barely heard of. If you're curious about CVS or have CVS and feel alone, this is a good episode to watch.

But this post isn't about what CVS sufferers go through in the Emergency Room, that's another post. This one's about traveling with chronic illness, or not traveling that is.

Probably one of the strangest things about this disease is that it comes and goes. It has been linked with menstruation and/or stress and has been called the Event Stopper. Reason being, is that this illness pops up around the same time as joyful events, knocks a person out, and they're then labeled flaky and unreliable.  With me, I've always worked extra hard at whatever jobs I've had at the time, then when I've become symptomatic and been out sick for a week, it wasn't too much of a stressor for whomever my boss was at the time. I still felt terrible for missing so much work, but now I know it wasn't really my fault.

That's why I've only taken vacations fairly close to home. On one side, I'm worried I'll get sick before I leave and have to cancel my trip; on the other side, I'm worried I'll get sick during my trip and land in the Emergency Room. That's a lot of needless worry for a vacation.

Two nights before we left for the coast I spent the night in a fetal position crying. I kept falling asleep then waking up in the midst of a panic attack that I was about to become symptomatic. Thankfully, because of the enzymes I use and the exercise, I didn't become symptomatic, however.


Because of how I've managed to abate most of my symptoms through diet and exercise, I didn't do what I normally do on vacation. I didn't spend the entire time clenched like a fist about to throw an air punch. I didn't try to do as much as I can the first day because of the gnawing fear that I may become symptomatic during my vacation and have to go home early. I had what others take for granted. I had a normal happy vacation. I ate steamed clams, built a sand castle, flew a kite. I was humbled by the vastness of the ocean as I stood in front of it so small and insignificant. One thing chronic illness has taught me: is to never give up. One thing abating my symptoms has taught me: never take a healthy minute for granted.

I'm a frequent flyer of the Emergency Room. One day, if things keep progressing better, I'll be a frequent flyer of the skies. I know I better start flying though, before I sink back into the abyss that awaits us all.

That's Not Just the Creatine, I Sometimes Punch Walls

There's a poster on the wall of my gym that asks the question, "What is your why?"
    I'm a book nerd. I don't visualize myself as someone with a perfect physique who models figure. My "Why" is my daughter.
    I knew there was something wrong with me before I had a baby. If I knew what I know now, I wouldn't have even had a baby. But having a baby is what saved me.
    Before procreating, I usually visited the Emergency Room about every three to four months. For years I carried my Emergency Room visits under a cloud of shame. I was ashamed that I was somehow an unhealthy burden to loved ones and medical personnel who were always baffled by my condition. I was often accused of being a drug seeker--even though the first thing they would do was take my blood.

I've noticed, or shall I say my husband noticed, that when I'm taking my creatine I'm a bit aggressive. Because I'm kind of on my own when it comes to treating my disorder, while the enzymes I take are listed as prescribed on my medical chart, I make up my own dosage. In addition to a healthy diet and exercise regime, I take Co-Q10, L-Carnitine, and creatine. Creatine is that powder that body builders use.
    My disease, Cyclical Vomiting Syndrome, is currently being studied. Scientists have linked this syndrome with dysfunctional mitochondria. The enzymes I take are all associated with the ATP energy cycle. The mitochondria are the nucleus of every cell in the body but the red blood cells. Therefore, I take these enzymes to increase the effectiveness of my mitochondria. So far I've had a lot of success with my system. I went from being a frequent visitor of the Emergency Room to only going there once in the last three years. I'm not cured, but my life is waaayyyy better.
    Before I became pregnant, I knew that morning sickness would probably be pretty epic for me. My obstetrician told me once that I had the worst Hyperemisis Gravidarum he'd ever seen. He'd already been in obstetrics 30 years before meeting me. Go big or go home, I guess. If you're wondering what hyperemis gravidarum is, Princess Kate made it famous with her first pregnancy.
    My visits to the emergency room increased exponentially the first months of pregnancy. They were so frequent they finally had to put in a PICC line to keep me hydrated.
    Although my visits increased, I was no longer treated like a drug seeker. I was no longer some baffling non-treatable patient. I was now a pregnant woman with a known condition, be it a particularly severe case. Go big or go home.
  Not only did having a baby change the way I was treated during my frequent visits, it changed how I treated myself and in many ways caused me to finally get a diagnoses.
    When my daughter was 6-months-old I came down with an episode. The idea of caring for an infant while vomiting six times per hour for at least a day, was something that I simply couldn't handle. Thankfully I had some dis-solvable zofran on hand that worked this time. I was safe, for now. A few hours later I examined for the first time what may have triggered this episode. I hadn't been exposed to the stomach flu, all I had eaten was homemade butternut squash soup I made from scratch. I couldn't be allergic to onions, butter, or squash. I ate those things all the time. The only thing different about my diet was the homemade biscuits I made with the soup. Could it be wheat that was causing this?
    I took out wheat and after one day stomach pain I didn't even know I had abated. A week later all my adult acne disappeared. A weak later my joint pain went away. I finally understood that I had some sort of condition, I wasn't just prone to the stomach flu. Years later and finally a diagnoses from a gastroenterologist, I'm no longer a frequent visitor and for the first time I'm finding joy in life. All of this wasn't because of me. This all happened because of my daughter.
    Not only is she my hero, she is my "Why." I put her on this Earth and she saved MY life. But, it's not supposed to be this way. She's supposed to be my step into the future, not my saving grace.
    Now age five, my daughter tells everyone how her mommy goes to the gym to get strong. She regularly asks if she can work out with me and get strong too. In her mind she sees a mommy dedicated to self improvement. Something I've heard is good for kids. She used to be my buddy in the Emergency Room (no one to watch her on short notice). She was always amazed by my blood draws and how you could make balloons with latex gloves. She has yet to put my gym life and my emergency room life together.
    I'm at peace with my body being compromised. I understand that my body is simply not as good nor strong as a normal person's body. I'm not a peace with how I put someone here, and didn't realize this before I did that. My greatest fear is that I put someone here that will soon be abandoned because stupid me didn't realize I wasn't healthy enough to have kids. I often wonder if and when she'll realize my epic workouts are to keep me out of the Emergency Room.

When my daughter says she wants to become strong like me and work out, I want to punch a freakin' wall. Instead of punching though, I concentrate. Concentrate on staying so I can be there in case she's the one who needs saving. Maybe it is the creatine talking when I take it post workout. Users say that side effects include increased anger. More likely though, it's the gnawing fear that I won't be here when she really needs me. Every day I'm getting stronger. It's doubtful though I'll ever get strong enough to actually make a hole when punching walls. And that's OK. As long as I'm here.

How Cyclical Vomiting Made Me An Introvert

In my most recent visit to the Emergency Room, my attending physician was at first only slightly interested in my predicament--which happened to be that I had begun vomiting 8 hours earlier and had yet to stop the recurrent episodes of intense vomiting that had been occurring every 15 minutes since then.  He inquired about my condition, then asked if I had used any street drugs or if I was a regular user of marijuana. I told him I did not use marijuana nor any other drug. I then said that I had Cyclic Vomiting Syndrome and I used to be a frequent flyer. However, because of my crazy MacGyver wits, I have abated most of my symptoms.
    Laying on my back in the emergency room with an IV. tube sticking out of my arm, I realized how idiotic I sounded at that moment. So I added, "Well, most of my symptoms. I am here."
    The doctor reacted at my statement in a way that I had never seen. Most people (I assume) aren't having exactly a good day when they are at the Emergency Room, but for me, my frequent visits were always pretty soul sucking.
    I've been belittled by nurses. "People don't have your symptoms! They just don't!"
    I've been treated by doctors like I was just another drug seeker. I've been told I either had to get out or get hospitalized, so I've left the Emergency Room while completely high on a cocktail of intravenous Benadryle, Zofran, and whatever else they happened to put in me. During this one visit I remember I was pretty delirious. When they finally got me to leave,  I remember having to use the wall in the long hallway from the Emergency Room to my car to keep me from falling. When I did manage to get to my car, it took me about a minute of attempted concentration before I realized I was too doped up on hospital meds to drive, crawled in my back seat, and slept. It. Off.

A lot has changed about the Emergency Room in the three years since they used to treat me then sweep me. For starters, the last time I was there I went straight into a small room and was seen by a nurse who hooked me up with intranvenous fluids and a dose of Zofran before I had even been seen by a doctor. Secondly, my condition now had a name and was known by everyone working in the hospital that day. Thirdly, my attending physician reacted very interested in my syndrome and for the first time wasn't looking at me like I was a giant unfixable inconvenience and just some frequent flyer who needed to be "Treated and Swept off the Emergency Room floor."

He wanted to know how I had stayed away for so long. Cyclic Vomiting Syndrome is barely treatable and incurable. I told him about my diet. I told him about my nutrition and enzymes. I told him about the exercise. His biggest reaction was my elimination of wheat from my diet, "How do you not eat wheat? It's in everything!"
   "It keeps me out of here," I replied. "Well, most of the time anyway."

For some reason, humans don't seem to recognize or acknowledge something that they don't understand or doesn't have a name. For years I just had symptoms. Symptoms that were nearly untreatable and so strange that MPs didn't even know how to treat me. Now, my symptoms have greatly lessened, my condition has a name, and doctors and nurses treat me like any other patient. Heaven on Earth!

Being belittled at by medical professionals and kicked out while even more vulnerable when I walked in, wasn't even the worst part. When a person is in the throes of dehydration and compulsive vomiting and finally gets plugged into fluids and the vomiting doesn't cease what do you think is the next logical occurrence? If you guessed that I totally would pee my pants in front of a room full of complete strangers, you guessed right. I have a drawer dedicated to sweat pants that have been gifted to me by the staff of the Emergency Room. Well, I can't say gifted. Most pairs generally costed between $1000 and $5000. Chronic illness is nothing if not expensive.

If you find any humor in my misery let me inform you, my medical chart clearly states, "Patient Has a Sense of Humor."

For some reason uncontrollable vomiting is not exactly pretty. Adults (as far as I'm aware) don't normally pee their pants. There was even an instance where someone asked me point blank, "What the hell is wrong with you?"
    "I think I may have been either Hitler or Stalin in a past life. Karma really has a way of showing up, doesn't it?" As my pants became soaked and my emesis bucket runneth over.

Because my illness is defined as an Invisble Illness, after an episode my life would pretty quickly return to normal. Quite possibly, however, my interactions with non-ill humans has caused me to be more introverted than even peeing my pants in front of at least five strangers. I've given up and even lost friends when I've happened to call the day after an episode to check in and see how someone is doing. Here's an example of several phone calls I've had with people after an episode. This is a generalization, but it's a pretty acurate one.
   Me:  "Hi (so-and-so) this is Tammy."
   Them:  "What the hell?"
   Me: "Suh, huh? I've been sick."
   Them: "I haven't heard from you in a week!"
   Me: "Yeah I had this weird stomach flu I get all the time. I feel a lot better now."
   Them: "I thought we were friends."
   Me: "Umm...we are? Or were?"
   Them: "I'm not talking to you anymore. People don't get sick like that."
   *Click* or silence.

I've been told that humans do stuff like this to feel more secure in a friendship and I was supposed to call them back and try and work things out. But I didn't. I get now that I'm a bit of an A-hole for not reaching out or calling back. The thing is though, I'm chronically ill. I don't know how many healthy days I have left here. I simply don't have time for that stuff. Dogs don't do that. I think anyway.

I've been told I'm extremely guarded. My question is, "If you walked a day in my shoes, had my experiences, wouldn't you be?"

I'm not guarded. I'm compromised. I'm chronically ill.