Tuesday, July 26, 2016
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.
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.
Thursday, July 14, 2016
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.
Thursday, July 7, 2016
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.
Friday, July 1, 2016
It then goes on to say that episodes generally start at the same time of day, with the same level of intensity. For the full article visit here.
The longest episode I ever had lasted 14 days. Since then I always go to the hospital within 24 hours of the start of an episode. I find use of medical help necessary for my condition as well as most other sufferers. I've waited to see if the symptoms would cease on their own. When I've finally made it to the Emergency Room anyway (not too many ways around this but prayer that the dissolvable zofran works), my potassium levels have been found to be dangerously low. Plus I've been so dehydrated that I've become completely helpless. The last time I went into the Emergency Room, I was waiting for the nurse to see me next to place the IV., I just sat there and gently slapped with the back of my hand the locked drawer that contained the IV tools. Sitting in a chair dizzy from dehydration, all I could do is smack the IV fluid drawer like it was an old TV with bad reception or a coffee pot that wont percolate fast enough. All I could think about was getting fluids in me. I became a saline addict that day.
I spent decades with this disease, not really understanding I had a condition and wasn't just more susceptible to the stomach flu or food poisoning.
There is no cure for this disease and no definitive cause. Although it is being studied.
Often children who suffer from migraines will come down with this disease. About three out of every 100,000 children will come down with cyclic vomiting syndrome or what some refer to as abdominal migraines.
Females are slightly more prone to get this disease and while all races have been afflicted, it does seem to affect caucasians the most.
Some studies say that chronic marijuana use can cause the symptoms associated with cyclic vomiting syndrome. While the symptoms are very similar, chronic marijuana use can cause a condition known as cannabinoid hyperemesis. A suffer such as myself, who has spent years being a frequent visitor to the Emergency Room, can tell you that this comparison is something I'm fairly sensitive about. This disease is just now getting recognized by the public and by the medical community. Before, when I went into the emergency room I would at first be labeled as what medical professionals refer to as a drug seeker. A drug seeker is someone who goes to the emergency room with the intention of tricking doctors into prescribing pain medications and who doesn't necessarily suffer from a medical condition. Because I was always initially screened as a drug seeker, it's fairly important to me that I don't use or be associated with marijuana or any other street drugs. To see my post about the difference between cvs and cannabinoid hyperemesis visit here.
Dysfunctional mitochondria has been suggested as a cause of the disease. The mitochondria are located in every cell of the body but the red blood cells. Because the mitochondria play a large role in energy production in the body, I refer to them as the car battery and our bodies the car. To see my post regarding this, visit here.
Mitochondrial disease is its own illness. Symptoms of this disease include poor growth, loss of muscle coordination, muscle weakness, visual problems, hearing problems, learning disabilities, heart disease, liver disease, kidney disease, gastrointestinal disorders, respiratory disorders, neurological problems, autonomic dysfunction and dementia. Currently there is no cure for mitochondrial disease although there is a test for it. There is no test for cyclical vomiting syndrome.
Though there are no current medications for cyclic vomiting syndrome, enzymes like Co-Q10 and L-Carnitine that both aide in the ATP energy production in the cells has been used with success. Other migraine medications such as Sumatriptan have shown to ease the severity of the symptoms. There has even been a recent development of nasal Sumatriptan to aide patients experiencing an episode.
Often when I would visit an emergency room, most medical professionals had never experienced a symptomatic cyclical vomiting syndrome patient. Most people probably wouldn't necessarily understand why a patient experiencing a CVS episode would need IV. medications such as Zofran or Reglan, or even intravenous fluids. When a person is having a cyclical vomiting episode they simply cannot stop vomiting. They vomit to the point of severe dehydration from fluid loss. In order to recoup fluids the vomiting must stop and/or fluids must be given to the patient. Occasionally if I managed to get to the hospital before I reached the point of dehydration, I would be given an injection to stop the vomiting. Usually though, I would go to the emergency room already dehydrated, need IV. fluids, and given a cocktail of drugs to try and stop the vomiting. It usually took hours, but so far the vomiting episodes have always ceased. When I am having an episode I vomit approximately six times per hour. I would come down with an episode about 3-4 times per year. Now that I'm on enzyme therapy (CO-Q10, L-Carnitine, Creatine) and exercise treatment, I've only had one episode in the last three years.
When I'm not symptomatic, other than recovering being bedridden for days, my life is fairly normal. That's why this disease is referred to as an invisible illness. It's so invisible I didn't even see any huge difference between myself and other healthy individuals. Perhaps I also suffered from optimism bias in that I wanted to be a healthy happy individual so much, I simply refused to see that my body wasn't like everyone else's. However, I see it now. I'm doing something about it. I've never felt more healthy or been happier.
There is so much more about this disease and new information is always emerging. If there's anything I missed or you think I should add please comment below and/or message me.