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Puke on a Plane

March 5th is the official International Awareness Day for Cyclic Vomiting Syndrome, aka CVS. If you’ve never heard of it, you’re among the vast majority. Those of us who are familiar with it – well… we wish we weren’t.

To learn the basics about CVS, you can refer to this page of my blog. However, the purpose of this particular post is to spread awareness, so I would like to make you aware of some of my recent experiences with this debilitating chronic illness.

On two separate occasions recently, I was that person on the plane. You know, the person who is vomiting, and no one wants to sit beside. The person who is retching violently with her head stuck inside 2 layers of garbage bags. The person everyone is terrified is spreading a dangerous disease among the passengers. But this isn’t airsickness… it’s Cyclic Vomiting Syndrome.

The image comes to mind of a person using the index fingers of each hand to make a cross in front of their body, in order to create a “barrier” between them and some perceived evil. Like a priest holding up a cross to the demon in front of him. I felt as as if all the other passengers were doing this towards me, even though none of them actually did. Sometimes it’s not even stigma, but perceived stigma, that can cause a Cyclic Vomiter to suffer the consequences of that stigma. It sometimes can also cause us to stumble upon some nugget of insight, or into a pool of misery.

Please allow me to re-create for you how these experiences unfolded, and how they made me feel. No, this isn’t a pleasant topic. But it’s the truth. It’s what happens to me. I desperately want others to understand what it’s like. Not to gross you out, or make you feel sorry for me. Simply to make you aware. This happens. CVS is a real thing. It’s not in our heads, and we haven’t done it to ourselves. Our voices deserve to be heard, and we deserve the support and awareness that is deserving of ANY chronic illness, regardless of how it is named, or what it does to our bodies.

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I prepared and organized everything as best I could to reduce the stress involved in this travel situation. However, if you’ve ever attempted to move from Alabama to Washington State, and purchase a home – sight unseen – due to a timeline limitation, you’d understand that there isn’t much that can reduce the stress of that situation except for careful planning, motivation, attitude, and simply attempting to stay on top of the details. But stress is a part of life. I can’t avoid it, and I’ve done well with this. I’m proud of how well I’ve done this far, and my husband and I will get through it eventually. It’s not going to be easy, no matter what I do or don’t do. I can’t hide from life, and will live it to the fullest, despite my disorder. Regardless, I was completely (and perhaps overly) confident I would make it through the ordeal without incident. – until this happened…..

I chose a salad from the menu of the random airport restaurant, thinking it was a safe dietary decision based on past triggers. It’s a “meal” type salad, and when it arrives there is a mountain of quinoa on top and I notice that it looks “heavy”. After a few bites, I began to feel “that feeling”. “That feeling” that is all too familiar, easily recognizable, and impossible to confuse with anything else. Subconsciously, I began to plead with the universe and pray my soul’s prayer that it will “just go away…. just go away….”. It didn’t just go away…..

Rewind to last summer… when I flew to Washington State and worked there for a month. While I fell in love with the area, and had some fabulous weekend hikes, I was a mess of stress during the 13 1/2 hour weekdays in an unfamiliar work environment. I had been misled by my superiors about my duties for the month, and was expecting a maximum of 10 hour days. I was also left virtually unsupported by my temporary supervisor, and felt very alone in my predicament. I expected an episode to occur at any moment during my time there as a result of the high stress. I was pleasantly surprised when I completed the month without incident. I thought I was home free! It also felt like a major accomplishment to make it through such a difficult and stressful period without any episode whatsoever. I saw it as an improvement in my condition, and saw it as proof that I can still tackle the opportunities in life that are made vastly more difficult by my disorder.

When I arrived at the airport in Seattle, I learned that my flight had been changed, and I would have to spend the next 12 hours in the airport waiting for my flight. But – I was headed home after a whole month, and nothing could get me down! It’s all about attitude, right? I was happy and healthy. I decided to walk and visit the entire airport. After 10 hours, 3 meals, and about 4 alcoholic beverages, I was feeling very content, sitting in my airport chair at the departure gate, waiting for my plane to arrive. Until – I felt “that feeling”.

It hit suddenly after eating what should have been a benign salad. I immediately felt the panic and terror, because I knew somehow that it wouldn’t “just go away” this time. It was already too intense. I visited the restroom several times prior to boarding. When I’m nauseous, and before the vomiting is uncontrollable, sometimes all I have to do is bend over at the waist, and the vomit comes without effort. Occasionally, once I’ve emptied the contents of my stomach, the nausea will simply subside. I desperately gave this a shot, knowing it was my last chance to stop the episode, but to no avail. With each trip, I felt the intensity increasing. I was about to board a 6 hour red eye flight at 10pm, and I was actively vomiting. My options were limited. I was on my employer’s dime and official work travel. I could either board the plane, or request hospital care to get out of it. I didn’t need hospital care at that point in time, so there was nothing to do except to board that plane. I’m scared, but my brain has also slowed and I’m not thinking clearly. I suddenly felt that someone I love should know I’m sick, in case of something going wrong. I text my husband in a moment of weakness to tell him that I’m nauseous and scared. But, the flight crew directs the passengers to turn off our cell phones before he has gotten a chance to respond. The flight is full. I have the window seat, and a young couple near my age are in the 2 seats beside me. Before the flight has taken off, I’ve already begun actively vomiting. It’s happening about every 5 minutes. The nausea is relentless and there is no relief from it, even for a second. I feel my body heating up. I begin to drip with sweat and hyperventilate…

It’s not the best thing for me to be alone when in episode. I go into what is called a “conscious coma”. My episodes are very “seizure-like, in the sense that I’m a prisoner within my body while it goes haywire. I no longer have fine motor control, and my mental status is a stupor at best. I can’t seem to stand up straight, and must stay bent over at the abdomen in attempt to quell the nausea. I begin to sweat profusely, hyperventilate, and sometimes panic – depending on the intensity of the nausea. I’ll normally sit or lie down if possible, curl into a ball, hang my head low, and attempt deep breathing. The desire to do this, and the inability to do anything else will commonly cause me to sit or lie just about anywhere, without care for the surface. I’ve been known to lie on a public restroom floor in a desperate attempt to escape the nausea. I know that’s repulsive, and would never, ever do such a thing under normal circumstances. This is a testament to the intensity of the nausea, and how it’s so strong that it changes my mental processes enough that I simply cannot care about the things I normally care about.

The poor, poor people beside me. I’ve left my seat for the restroom as often as the captain will allow the seat belts to be unbuckled. But that isn’t as often as was necessary. Not only have these nice folks had to witness at close range my retching into garbage bags, but now I’m sure they can smell that I have also soiled myself. It’s something that typically happens in the early stages of the episode. It’s coming out both ends for awhile, until I’m completely void of contents within my GI tract. I’m absolutely unable to control it or hold it in. Normally I’d sit on the toilet with a bucket, or put on an adult diaper. I can do neither in this situation, and I pray for the “dry heave stage” – which is another type of torture altogether, but at least no one can smell it. This might be the worst and most embarrassing moment of my life, yet I’m too sick to be truly embarrassed. I have crawled over both of them clumsily numerous times now. I consider asking one of them to switch seats, giving me the aisle, but the truth is that I can’t bear to sacrifice the window seat, for the ability to lean on the wall. I can’t hold myself upright. I absolutely must be able to lean over since I can’t lie down. Plus, the cool feeling of the plane wall against my face and neck is soothing. They are gracious people and neither question me, nor act annoyed at being woken so often to let me pass. Actually, they don’t even act as if anything is out of the ordinary. I’m thankful for their attitudes. It comforted me that they seemed to be unaffected. I’m sure they were very affected, in fact.  I clamber over them yet again, in order to visit the restroom and dispose of my favorite pair of panties in the trash bin. I stuff as much toilet paper as I can into my pants to catch any future surprises. Improvisation on a reduced mental capacity can be interesting….

airsick

I can accurately describe both of my “plane episodes” as 2 of the worst experiences I’ve lived through. Don’t get me wrong, I’ve had worse and more intense episodes than these. What makes these worse than others is the lack of control I have in the situation, and the complete inability to get comfortable, treat myself properly, or find any relief. Over the years I’ve learned several “tricks” that help me cope when in episode. I’m unable to do most of these things in an airport/airplane situation. Some of those things include, but aren’t limited to:

  1. getting naked and wrapping myself in a terry cloth robe to wick the sweat, and prevent chills and shivering
  2. placing a fan so that it blows on my face only
  3. hanging from the waist down off of the side of the bed, upside-down with head hanging down nearly to the floor inside a bucket. I brace myself from falling off the bed by placing my hands lightly on the floor (I’m not sure why this helps, but it does. Perhaps it’s blood pressure related. My husband says this seems to be my “favorite” way to throw up.)
  4. having the ability to lie flat, curl up, spread out, or flip-flop around at will to aid with comfort
  5. if it is possible for me to lie perfectly still and deep breathe I have the best chance for sleep, which will stop the episode

Becoming perfectly still and relaxing, in order to fall asleep, is the #1 most important thing I can do to help reduce and/or eliminate the symptoms of a CVS episode. Those are also the things that are next to impossible to accomplish. My nervous system is over-firing, and is stuck in the ON position at maximum speed. Aside from a terrifying dosage of intravenous chemical sedation with Chlorpromazine (aka Thorazine) in a hospital setting (which seldom works anyway), I’m at the mercy of the things I have available to use in the moment. A public setting is never conducive to stopping an episode, and an airport setting makes it virtually impossible. Keep this in mind when reading about the actual episodes. In many instances I have no chance to stop an episode, and am sentenced to serve the time suffering, until it stops on its own.

I’ve been in the bathroom on the airplane for nearly an hour by my best estimate (which isn’t a good one, because I’m time warping in my mind). I need to be still and relax. The only time I can accomplish this is on the toilet in the bathroom. I sit there, lean over, hang my head low between my legs towards the floor, and manage to lightly doze off for several minutes at a time. I wake frequently, wondering if anyone is waiting outside for the restroom, but I don’t leave. No one has knocked. I’m in a “conscious coma” at this point, and will seek comfort at all costs. Since it is around 2am, I assume that most passengers are asleep, and not many need to use the restroom at this hour. The plane is large, and there is another restroom directly across from me. Plus two more at the front. I figure that people can use the others, and I decide just to stay in the restroom until someone forces me to leave. Looking back, it feels disgusting and appalling that I felt so comfortable relaxing and sleeping in the tiny airplane restroom. It just goes to show exactly how much misery I’m in while in episode.

The plane episode last summer was more intense than the plane episode I just went through a couple of weeks ago. The most recent episode felt less intense than the one from last summer, but the reason might have been that having been through it once before caused me to feel “more practiced” in the scenario, and thus less anxiety was present. The first time it happened, I felt helpless and doomed to my fate. I felt exactly the same way the 2nd time – but I also knew what to expect. If you know anything about anxiety you understand that “unknowns” will always cause an increase in anxiety, while knowing what to expect can vastly reduce anxiety in any setting.

I’ve been actively vomiting every 15-30 minutes for over 6 hours now. I’m weak and dehydrated. I’ve been sipping water and ginger-ale frequently to prevent dry heaving, which usually leads to my vomiting blood due to the constant stress and irritation to my stomach. (Most of the time there’s not much blood, but if there’s an increase I’ll be concerned that I’ve torn my esophagus or stomach.) I’ve also supplemented my water with electrolytes to prevent a dangerous drop in my potassium, which is common for me in an episode. I barely have the mental capacity to reason these things out and remember to do them. I know if it doesn’t stop soon I’ll need hospital intervention for an electrolyte imbalance. I need to change planes in Atlanta airport, and don’t have much time on my layover. ATL is huge, and I’m not likely to make the flight if I attempt the walk alone. The stewardesses are aware of my predicament at this point, and have offered their help getting me to the next plane. I’m rolled in a wheelchair across the airport to my next gate. At the gate, I’m unable to sit upright in the chair, due to the nausea and abdominal pain, so I lie in the floor next to the wheelchair, which is located next to the gate desk. The attendant notices me lie down and asks which flight I’ll be on. I thought she would tell me I can’t lie in the floor, but instead she promises to wake me if I’m asleep when my plane arrives. I’m grateful, because it removes another element of anxiety for me. I relax as best I can and close my eyes.

I’m on the last leg of the flight. It’s a short flight – less than an hour, and my husband will be at the airport waiting to drive me home. I can see the light at then end of the tunnel. Even though I’m still sick and feel horrible, at least I’ll be with someone who knows how to take care of me, and I’ll be able to do the “tricks” that might help this episode to pass. Fate has smiled on me for the moment, and my assigned seat is near the rear of the plane next to the restroom. Another stroke of luck has prevented anyone from being seated next to me. The flight attendant is seated behind me, and I ask him if I can lie across both seats. He follows the rules and tells me I can only do so until take-off, at which point I’ll have to sit up – but when take-off occurs he sits behind me while I continue to lie down, and says nothing to me. I’m grateful yet again for another person’s ability to be reasonable. Turns out that although I’m near the restroom, I’m not allowed to use it for any of the flight, on account of the flight being so short that we won’t reach a cruising altitude, and as a result won’t be allowed to unbuckle our seat belts. I’ve loosened my own belt enough that I can lie down, and I’m grateful for that much. I’m still actively vomiting, but the frequency has slowed to every 30 minutes or so.

The flight attendant sitting behind me begins to ask me a series of questions to determine if I am contagious and posing a threat to the other passengers. I’m typically unable to communicate effectively during an episode, because any attempt to speak causes the intensity of the nausea to spike suddenly, and I’ll usually vomit on the spot. I do my best to gather my thoughts and explain to him that I have a chronic illness that isn’t contagious. I manage to tell him the name of the disorder. I have documentation that he can read about in my backpack – which is right next to me, but in my current mental state of “conscious coma” I’m unable to remember that I carry this important document around for moments just like this one, and I fail to give it to him. Looking back, I’m at an utter loss for an explanation to how I could fail to remember this, but it’s always like this. My brain just won’t work while I’m in episode. The flight attendant grills me enough throughout the flight that I’m positive that the airline has discussed coming to my house to quarantine me if I infect the entire plane with some deadly disease. I wish I could reassure him, but he won’t take my word for it, and I guess I don’t blame him. I know I’m not contagious, so it doesn’t matter.

When I finally land at my final destination I’m taken in a wheelchair from the plane to the baggage claim area where I gather my bags, and am then wheeled outside to my husband who is waiting in the car. He has put the back seats down flat, and added a big puffy comforter and pillows for me to lay on for the hour long drive. The second I get into the car and lie down I can feel the anxiety begin to unravel. I can finally relax in a private environment. I can finally take on or off clothes at will, and I can finally flip or flop around at will. I only vomit twice during the ride. When I get home I fill the bathtub with the hottest water I can stand, and I soak for 2 hours. By the time I’ve gotten out the nausea has subsided nearly completely. I’m unable to eat for the next 24 hours, and it takes nearly a week for me to feel that I have a normal energy level again.

The more recent plane episode had a slightly different outcome, since I got sick on the flight that took me to the place where I still needed to accomplish something in a timely fashion, rather than on the way home after it was all said and done…

So… the salad from the very beginning of this post… I ate it. I felt “that feeling”. And – it didn’t just go away….. I’m devastated to know I’m about to go through this process yet again less than 6 months since the last time this happened. Solo air travel is becoming a source of anxiety and I’ll likely be afraid to fly alone after this. I don’t want to go through this again. No one will be waiting to help me this time when I arrive at my final destination. I feel that familiar panic, and feel very alone in my predicament, yet again.

It happens pretty much just like it did with the first plane episode. This time there is an empty middle seat, and I ask the person in the aisle seat if he minds if I lie across the middle seat. He is aware of my vomiting, since he can see my head in a bag every 5 minutes or so, and he nods to me without question. I thank him and my lucky stars. This time the diarrhea is minimal, and I’m able to control it more. I only have to disturb him to pass by for the restroom a few times during the 4 hour flight.

The plane makes another stop, but I won’t have to deplane. I’ll sit there while the other passengers de-plane, new passengers board, and then we’ll fly on to my destination. I’m grateful yet again for small miracles. I get to sit down rather than be forced to move or walk. There’s not much that could make me happier right now (except for the nausea and vomiting to subside, of course). Several new passengers ask if the seats beside me are taken. I respond with “no” and promptly begin to vomit into the garbage bag from the effort of speaking. Every single person reacts with a faltering smile, tentatively sits in the aisle seat while looking very concerned, and then gets up after about 3 seconds and finds another seat. The flight is not full. Another miracle. No one who sits beside me stays. I now get 3 seats to lie across for the last 3 hours of flight. The universe seems to be helping me and I’m yet again grateful. Vomiting is occurring every 15 -30 minutes now.

I arrive in Portland at 9pm. I’ve never been to this city, I’m actively vomiting, and I now have to take a shuttle to the rental car place before driving alone for 45 minutes to my hotel. It’s not safe for me to drive. I know that. I don’t condone this for others. But I don’t know what else to do. My current mental state is to seek comfort at all costs. It’s an intense drive that I’m unable to ignore in my misery. The episode won’t stop until I can relax and sleep. I have to get to a place where I can take care of myself, and there’s no one with me. I don’t have another choice. I can’t afford to pay for a 2nd hotel right here, and I have just flown across the country to meet with a real estate agent and house hunt in 12 hours. My time and options are very limited. Luckily, the “conscious coma” isn’t as intense as it normally is. I manage to stand straight and communicate effectively for long enough to pay for my rental car at the counter. I excuse myself for the restroom at least 3 times in the middle of the transaction. The whole time I’m thinking, “You’ll be in the car soon. Then you can be alone and able to vomit in peace.” Just getting to the car seems to be a monumental task, that when completed feels very significant.”

I drive in the rain, at night, in an unfamiliar city, with a garbage bag stretched from my fingers on the steering wheel to the fingers under my chin. I force myself to hold my eyes open while I vomit on the interstate. I take my foot off the gas each time, maintain the steering wheel, and stay in my (far right, when possible) lane. I’m actually glad that it’s night for one reason – the passing cars can’t see what’s happening behind my wheel. It’s the longest 45 minute drive of my life. My head is filled with the mantra – ” Just 40 more minutes to a bed… Just 39 more minutes to a bed…. Just 38 more minutes to a bed….” for the entire journey.

I have finally arrived at my hotel. The check-in procedure feels like torture that occurs within inches of the finish line. “Just 5 more minutes to the bed…” When I finally close the hotel door behind me it’s as if a huge weight of anxiety has been left in the hallway. No one can see me. Finally! I drop my bags where I’m standing in front of the door. I begin to pull my clothes off layer by layer. I don’t have the strength to stand in the shower, so I lie in the bathtub with hot water for about an hour. I get out and get into the bed and wish for sleep to come. It doesn’t. I attempt deep breathing. I try to quiet my mind. It’s impossible. I cannot remain still. The nausea is not relenting and is causing me to flop and writhe around in the bed, the way I wanted to do on the airplane but couldn’t.

It’s midnight, and I’m supposed to meet the Realtor to look at houses in 9 hours. I just want 3 hours of sleep, but more would be spectacular. I don’t get any. I flop and twist around in the bed like a tornado of nausea. The sheets are all over the room. It looks like all of my bags have exploded. I had to throw everything out haphazardly to find what I needed immediately. There is no relief from the nausea. I don’t know what to do about the fact that I likely won’t be able to function in the morning to perform the task I flew here to complete. Thinking about this isn’t helping me to relax or sleep any…

I finally doze for an hour. When I wake, it’s a glorious moment. The nausea has passed. I’m so thirsty I could drink a lake, and I feel hunger, but know it could be a trick…. I drink some water and eat a piece of apple. The nausea returns immediately and I’m vomiting all over again….

Repeat the above paragraph 3 times before 8 am. I’m beginning to think I’ll never be able to eat or drink again without triggering the nausea. I call the Realtor at 8 am to ask to reschedule our meeting for the afternoon. He agrees. I attempt sleep once more. This time I sleep for 3 hours. That’s my magic number: 3 hours of sleep = episode stopped.

The Realtor has brought me chicken noodle soup and Gatorade to the hotel. He is my angel. It helps. I’m utterly exhausted, but at least I’m not nauseous or vomiting. I can do this. It will be hard, but I can. I have to.

And I did. Like the Cyclic Vomiting Warrior that I am – I did it. It’s hard to believe that I could get in a car with someone and look at houses for several hours – only a few hours after a 24 hour long CVS episode.

But I did it. Because I’m a Warrior. Because I won’t let this stop me from living my life. Because I’ll never quit fighting.

Please be aware of my fight.

*Cyclic Vomiting Syndrome Awareness Day*

March 5th, 2016

 

 

Stop Judging and Labeling CVSers! We Are NOT Drug-Seekers!

I recently came across an article online, from Gomerblog, that made me so furious that it has taken me a month to write and post about it. The name of the article is: “Drug Seeker Fills Entire Emesis Bucket With Noise Before Receiving Dilaudid“.

The introduction to the article names a person and labels her with a “mysterious case of opiod-induced gastroparesis” However, this label was not what the original article said! It read, “Cyclic Vomiting Syndrome” when the article was first published online about one month ago. You might imagine my reaction…

Below I copied and pasted the entire article from Gomerblog, with their apology comment, for your convenience. Click here to visit the actual article online.

DAYTONA BEACH, FL – Deborah Samson, a 47 year-old non-diabetic drug seeker with a terrible but mysterious case of opioid induced gastroparesis, was forced last week to languish for approximately 25 minutes before receiving the parenteral narcotic she so desperately demanded due to the callous inattention of local Emergency Department staff.

During that time, Deborah consistently emitted sounds which were mistaken for those of a yak being run over by a train.  The horrid, violent wrenching quickly filled the pink emesis bucket with an amount of noise never before produced by a human.  She then spat out 0.5mL of clear saliva and asked for another bucket, and the entire process began again.

“HHAaaaaaYAAAAKKKKKKKKKKK…pheeewtoo”

“I have a horrible disease!!” she managed to scream between bouts of vile and guttural moaning.  “My stomach empties entirely too slowly — you can look it—-yaaaaakkkk— up because it is on record here.”

The test to which Deborah referred to, is a nuclear medicine gastric emptying study, which determines how quickly a meal exists the stomach and enters the upper intestine.  Despite the fact that she had three different bowel-slowing narcotics in her system, her doctors were puzzled as to why her stomach emptied at a mere fraction of the rate of a normal person’s.

When seen in diabetics, gastroparesis leads to frequent bloating, early satiety, and vomiting.  When seen in non-diabetic opioid induced gastroparesis drug seekers, it leads to incredible amounts of abdominal pain and vomitus consisting of 99% noise.  The sound of a non-diabetic drug seeking gastroparesis patient vomiting is said to sometimes measure on the Richter scale.

According to Deborah, the only medication which will stop the flow of noise emanating from her innards is Dilaudid.  Unfortunately, it also slows her intestinal transit time even more, so the cycle repeats itself.

When it was recommended by Dr. Herb Eaversmells, a local gastroenterologist, that she try to wean herself off of narcotics since they were only exacerbating her problem, she replied, “I’m never seeing you again.  I can’t live without my percocets, fentanyl patches, and IV dilaudid.  Get out of my room now, you quack.  You are starting to upset my gastroparesis.  Tell the nurse to bring me a large bucket and some more dilaudid.”

***End of Article*** The paragraph below is pinned to the top of the comments list after the article.

**Gomerblog OFFICIAL STATEMENT** Ok normally we don’t like to intervene in the comments section, but we feel obliged to this time. First off we would like to apologize for including Cyclic Vomiting Syndrome (CVS) in the original article. It is a horrible disease and should not have been lumped together with drug seekers. We edited it to “opioid induced gastroparesis” which is a better reflection of the articles original intent. Unfortunately drug seekers and “actors” are the true problem for us medical professionals and for patients with real gastroparesis. These drug seekers put on all kinds of shows in the ER and make it very difficult to discern real disease from drug seekers. Opioid abuse is rampant in the US. In 2012, 41,000 people died because of drug overdoses. In 2011, 2.5 million ER visits were the result of prescription drug and opioid abuse. Medical providers who prescribe opioids are putting their medical license on the line and are responsible for the outcomes and it puts us in difficult situations sometimes. The articles intent was to shed light on how ridiculous and how low these drug seekers stoop to acquire narcotics. Opioids cause nausea + vomiting, and are probably a poor choice in gastroparesis patients for this reason. The article is not making fun of true gastroparesis patients but rather the drug seekers bogging down our system and causing professionals to become jaded with their acting. We apologize if you have true gastroparesis and were offended. It was not our intent. Gastroparesis does have real complications and can lead to serious morbidity and mortality. Opioid abuse does too though.

Angry and hurt don’t even begin to cover the emotions I felt after reading it. (To be clear, I read it long before the “apology comment” was added.) And I wasn’t alone. After many outrageously angry comments from sufferers of various true disorders, someone decided to change the label of the woman in the article from “Cyclic Vomiting Syndrome” to “opiod-induced gastroparesis. . And made the apology statement and acknowledged that CVS is very real and very terrible. They defended the article by claiming it is “satire” associated with the behavior of true drug-seekers. It’s not enough for me, so I’m speaking up. It’s the satiric attitude that is damaging to those with true illness in the long run.

A lot of damage was done here. Stigma and misinformation was spread far and wide. I saw more comments from medical professionals who laughed and clearly stated that they don’t believe in our illness(es) either. The comments were exceedingly condescending and judgmental coming from people with whom I have no choice but to trust with my life when I need the ER to prevent life-threatening dehydration/electrolyte imbalance. It made me feel judged, alone, and scared to trust the ER in the future. Which can lead to my failing to go to the ER when I need it the most.

This is going to stir up a ton of emotions. I’m angry too. But it is a topic that needs more attention, so that’s what I’m giving it. Despite the anger that I know the article will incite in CVSers, we should all know exactly how others are potentially MIS-judging us and MIS-labeling us. There are people in this world who are so addicted to their drug-of-choice that they will learn the symptoms of medical disorders such as CVS, gastroparesis, etc… with the intent of “acting” sick in the ER to obtain the drugs they require.

This drug-seeking phenomenon is apparently so common that ER staff have become jaded, and in many cases seem to leap to the “drug-seeker” diagnosis without giving the patient the true benefit of the doubt. This is a huge problem, because as more time passes, more and more people with legitimate illnesses are being turned away from the ER due to the “appearance” of being a drug-seeker. This is a fact. It has happened to me, and to many people I know and correspond with.

Another frightening fact is that CVSers can die from things like dehydration and/or electrolyte imbalances when those symptoms are ignored or treated inadequately. We are frightened as well as miserable in our suffering when we seek the ER for help.

I know from experience that once they make the decision that you are a drug-seeker, there is no amount of begging, pleading, or reasoning with them that will change their minds. You might as well walk out and try another ER, because all of your anger and righteous indignation will only be seen as further evidence that you are in a belligerent state of drug withdrawal.

Can you imagine how you would feel if you knew your body was very sick to the point of dangerous outcome, and you went to the ER for help, and you were turned away due to the misconception of being a drug-seeker? I don’t have to imagine how I would feel. I’ve felt that way before. I describe it as a feeling of helpless anger and terror.

In the apology comment, the author of the article does admit his mistake. But I think the entire point is that he/she got it entirely WRONG at first! This person has had experience with drug seekers, and apparently bases his/her future reactions on those experiences first. It wasn’t until some angry readers brought it to his/her attention that there are legitimate disorders which cause these exact same behaviors, that he/she retracted what was originally said and apologized for any implications otherwise. If I had met this medical professional in the ER, I would have been at the mercy of his/her snap decision of me. And he/she would have been wrong! So, then what might have happened to me as a result of this incorrect decision? It’s a scary thought.

I have become so electrolyte depleted in the past that ER doctors have told me that I am in danger of cardiac arrest. This happened within a couple hours of episode onset. It is not always that intense, necessarily, but sometimes, with some people it is. (Thankfully my episodes aren’t quite that intense recently.)

The implications of being turned away from the ER due to the appearance of being a drug-seeker are much more severe than it might seem at first glance! I hear of CVSers being turned away from the ER on a daily basis and it is absolutely unacceptable. I am scared for my friends and what could happen to them.

Yes, drug-seeking is a terrible thing, and is costly to the system. It also misdirects the ER staff attention from those who are truly sick. It causes distrust and uncompassionate behavior between medical professionals and patients. But it also causes the people who truly need help to distrust medical professionals and feel animosity towards them.

However, if you are a medical professional, I implore you to refrain from the “satire” that was displayed in this article. I further implore and challenge you to take a different approach the next time you suspect a drug-seeker in your path. I can understand the frustration of giving the drug-seekers what they are seeking. But please see that is their karma, not yours. Wouldn’t you feel much worse if you assumed incorrectly, and someone in true need of treatment was turned away by your judgment? I deeply feel that it is much better to err on the side of caution, than to risk an error that could affect someone so negatively and deeply.  It is not the job of you as the medical professional in the ER to intervene when someone is abusing drugs. It is your sole job to administer treatments for illnesses/injuries and prevent people from suffering pain or dying from those illnesses/injuries. You are not a judge nor a jury, and have no right to impose “your form of poetic justice” on the individual, regardless of their crimes.

Change begins with us. Be the change you wish to see in the world. Thanks for listening.

 

 

Some Doctors Are My Nemesis

Written on 4/24/14

Yesterday I decided to walk into my general practitioners office to have blood drawn. I want my Co-enzyme Q 10 (CoQ10) levels tested before I start on the supplements to know what my baseline is, and if supplements change it at all. And I wanted him to prescribe the L-Carnitine. I haven’t taken the supplements in almost 4 years, but I’m stepping up my game since I have had episodes breaking through after a long period of wellness. I want to make sure that I’m doing everything I can for my mitochondria. I love that I can use natural supplements to do so.

I didn’t get to see my doctor. I was pawned off on the nurse practitioner AGAIN who has seen me the past several times I have been in. The last time, the reason for my visit was to make them aware that I had several episodes over the last several months. That’s when he pulled out his phone and looked up what the Mayo Clinic says on CVS. I wanted tell him I could regurgitate all that to him if he would just listen to me. I get the feeling they think I am a hypochondriac. Maybe it’s because I don’t go to the hospital where my general practitioner is an attending and they don’t see my episodes. I’ve had better luck in the ER in the other hospital local to me, so I just go there and none of them at my general practitioner’s office ever know about my episodes until I report them later.

Anyway, the first thing he did was walk through the door and address me as “trouble”. I was crestfallen immediately. I can tell without a doubt that he knows nothing about this. I had anticipated having to see him instead of the general practitioner who does actually know about CVS, so I brought him the research article about treating adults with CVS with Q10 & Amitriptyline. He flips through it for 5 seconds and then says, “I wouldn’t put much stock in these type of studies”. (This is a good study!) I was on my defensive big time. I told him I have researched this in-depth for 7 years now and that most of the information I use is anecdotal from the message boards and that the only reason I brought that to him was so he could see a reference that would justify my asking for the test and the script for the supplements. He kept trying to be dismissive about things I said as if I was some crazy person making things up. He kept ignoring me when I spoke to continue typing into the computer. I also gave him a copy of the 2008 Empiric Guidelines for Treatment of Cyclic Vomiting Syndrome and told him that I meant for him to keep the research article and empiric guidelines for him to read about it later. He handed them back to me 3 times with me saying “I brought those copies for you”, as he continually handed them back. He finally took them out of the room and I’d bet anything he just tossed them.

He did finally agree to script me out the supplements. The lab there couldn’t accommodate a blood sample for CoQ10 because it has to be frozen and protected from light. (He had to go look it up to tell me that) And that I would have to go to the hospital to have the blood drawn. He then starts saying that it is probably an expensive test and my insurance might not cover it. I asked him how they could refuse to cover a test for which I have doctors orders that is concurrent with the treatment of CVS for which I have the diagnosis. He shrugged his shoulders, said that he had put his “stamp of approval” on it, but didn’t know what would happen.

He then said, “If it were me I would just take the supplements and be happy if they help. Why do you HAVE to know your current blood levels if it makes you feel better?
I almost came apart. I said that no I didn’t HAVE to know, but that I wanted to contribute to the research on this disorder. He sighed and said ok.

I do not understand this attitude in a medical professional! Why why why would a doctor be so uninterested in something that is a debilitating disorder for people?? Why would you not encourage all the testing possible in efforts to learn more about this?? As a veterinarian who has been in private practice, I can tell you that when unusual things come in we eat. it. up. It was a great day when I could learn something new and say that I have treated something successfully that most other vets won’t have the luck to come across in private practice. Those are the little gems we hold near and dear to our hearts and brag about when we are in a room full of other veterinarians. I simply don’t understand any attitude that is less than enthusiastic about learning.

I could tell that this guy had no interest whatsoever in learning about CVS. I don’t want to see him again. I’m thinking about firing the whole practice if my next visit is the same. I have an actual yearly appointment with the general practitioner soon, so I should get to see him and not the nurse practitioner, but if they give me the nurse practitioner again on my yearly visit with my doc, I’ll pitch a fit right there and not leave until I see him.

I can’t even begin to bring up topics such as mitochondrial dysfunction to discuss in more depth because the people here don’t even know the basics of CVS, and might not even believe in it.

I need specialists. I need a neurologist to talk about dysautonomia with.

At least I didn’t leave empty-handed. I have orders to give a hospital for the blood work and I now have a script for L-Carnitine and CoQ10. I will have to see if insurance will pay for the blood work before I go, because I don’t have extra funds for it now.

Just SO frustrated now. I know I’m not alone. Thanks for the vent!