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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

 

 

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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.

 

 

Birthday Girl Gets An Episode

Written on 10/22/14

Happy birthday to me! In 8 years of having CVS, I had my first episode on my actual birthday when things were planned for me. I’m not a fan.

Drove to Birmingham to meet my best friend. 2 hour drive. We got nails done and met friends for dinner. I played it so safe and only ate whole foods all day long. Nothing that has ever been a trigger. No alcohol at all. Trying everything to prevent what I felt would happen in the end.

Speaking of that… Which was it? Did I have a feeling that it would happen, and that feeling came true? Or do I always have a feeling things like this will happen when I have positive excitement, and when they do happen, I  then later I just assume my feeling came true. But, could it have been that it would have come true anyway, or it might not have, and my “feelings” have nothing to do with it? Like a self-fulfilling prophecy almost? That probably makes no sense at all to anyone other than me…. But I wonder how much my excitement and anxiety push me over then edge, or if I would have gone over anyway…

Any who… I started feeling the prodrome during dinner and tried to ignore it and make it go away. This rarely works but I’m still stubborn and try. Then I took meds. No effect at all. Still nauseous. We were scheduled to play laser tag after dinner because that’s what I had told everyone I wanted to do. We go there and I decide to try to vomit in the bathroom and stop it before it started. So I did. And felt better for all of about 5 minutes. Then it all came back. This is while we are waiting to be called back for laser tag. So, I got to a point that I knew I wouldn’t make it out of there without vomiting, and I also knew I was getting too nauseous to have any kind of fun, and getting on my way to being too nauseous to function. I didn’t want to get stuck inside that maze and need to puke. So I very embarrassingly told everyone who showed up to play laser tag with me that I was too sick to try to play. They were understanding but I felt like a complete ass anyway. They were only there because I wanted to do that. My friend had bought my tickets and they were non refundable, which made me feel horrible. I went to the car and puked in the backseat while they played. They tried to get me to let them take me home right away, but there was no way I was going to let them all leave without at least playing the game they had showed up and paid for. So, it was about 30 or 45 minutes in the back of the car puking and waiting on them. Of course, by the time they came out I was much worse than when they had left me and they all felt horrible about it.

My friend brought me back to her place where I completely destroyed the guest bedroom of her apartment with my flailing and thrashing about all night. I’m sure her apartment neighbors could hear me puking and no one got any sleep at all. She had to go buy me Gatorade in the middle of the night. She’s an amazing friend and she didn’t complain at all. But she did get really upset. It’s the 2nd time she’s seen me in episode. She gets upset when she can’t do anything to help. I nearly felt like I needed to comfort her, instead of the other way around lol.

Oh, and I tried the injectable sumitriptan. She injected me with it twice, as directed, throughout the episode, and neither shot did any good at all. Nothing. Nada. I didn’t even get the weird sensations people say they get for a few seconds when they take that stuff for the first time. I didn’t feel anything from it. Not a blessed thing. The “things migraine” don’t ever seem to help me at all, and that’s been consistent for years. So, now I know yet another abortive drug that DOESN’T work for me lol.

Also, we talked about how I probably shouldn’t go on our Girl’s Trip weekend that we have planned in November. To the Grove Park Inn and Spa in Asheville, NC!!!!! A RELAXING trip, no doubt, that would become much less relaxing to the others when I interrupt it with an episode. Because I look forward to it so much that I get sick, no doubt. I try not to be a pessimist when it comes to this thing. I try not to let it control me or keep me from living my life. But I have been back on a once a month, if not more, pattern for several months now. That’s a big flare up for me, and something, I’m not sure what, is not letting my efforts with diet count for fewer episodes.

I think my hormones are changing, based on occasional erratic periods that are becoming erratic more frequently, despite that the ONE hormone test I’ve had done recently says “normal”. And I think that hormones and positive excitement are my most consistent triggers. I think by keeping hormones under control I have fewer episodes, but when they are out of whack I have more that happen during positive excitement circumstances. Just grasping at straws as usual when I’m discouraged….

I know my diet is helping, and that it might take years for it to help on a large-scale. But I feel that hormones and positive excitement are triggers outside of that box, if you will, and those are going to need to be addressed separately.

So, I’m feeling a little down about having to step back from the spa trip that I have already paid for. I don’t want to go get sick, and I don’t want to ruin their time if that happens. There will be more in the future. sigh…

Back to the episode….

I wasn’t at home, 2 hours away. I had my meds with me, but none of it worked at all. I couldn’t fall asleep, period. I flailed around for nearly 24 hours before giving up and calling my parents to come get me. They had to turn their day upside down to do it, but they did it. I love them. And they brought me all the way home. I slept for 30 minutes on the drive home, and that little bit of sleep helped to stop nearly all the nausea. It gradually went away after that, but was tolerable, as opposed to before at her house where it wasn’t subsiding enough for me to drive home. I actually talked to my dad most of the way home, which is a good sign for me. If I’m nauseous, I’m generally not talking unless it’s absolutely necessary. Then I got home and finally smoked. And it all went away. Just like that. Makes me never want to leave the house, and how sad is that???!!!

It took 2 days for my energy to come back though. I stayed in the bathtub nearly all day on Monday, and spent Tuesday making food that I can eat for the rest of the week. My hubby is out-of-town and I didn’t realize how much energy it would take for me to be by myself the 2 days after an episode. I should have realized, it’s like this every time I can’t stop them and they go on for any amount of time. But I didn’t realize, and ended up taking 2 days off work this week that I didn’t have available to take. I’m out of sick leave and covering with my vacation time. Which blows. But I’ve been out of both before, and I shouldn’t complain as long as I have some time to use.

Something has to give. Why oh why am I in this flare up that won’t stop? Hormones? Anxiety still?

I’m very stressed in my personal life, and I don’t handle it well. I have made lifestyle changes that help me to feel better between episodes and about my life in general, but aren’t helping my episode frequency per se. I think I’m emotionally overwhelmed at home. I really think it’s making things worse. But how do I do anything about that? I can’t stop the daily stressors of life?? I try to handle them well, but some things just make me so upset that my body is getting distressed too. These are the things that we can’t escape in life, so I don’t know what to do.

 

Woman Crying

 

Goal = Wean Off Nortriptyline

Written on 7/18/14

Wow, I’m really gonna do this!!

I saw the psych today that scripts out my nortriptyline. Last time was 6 months ago. I updated him on going to the conference and about finding the positive correlation between my having regular episodes and wearing the Nuva Ring. He agreed when I told him I’d never take hormonal birth control again. I told him about going on the supplements seriously and how it has made a drastic difference in my energy levels. He seemed excited (genuinely so, I think) when I told him I’d been running about 10 miles per week, and that I have hardly any anticipatory anxiety about episodes. He loves that I am using exercise and diet as preventatives. We also discussed that nortriptyline is now a class D drug in terms of pregnancy. (*note* I have since learned that this isn’t true, and it is still class C.) He agrees that it is dangerous for me to take it when I am not able to use a more reliable form of birth control. So, when I suggested weaning off, he was very supportive and completely on board. He said he thinks I’ve come a really long way and he thinks I can do this!! He is very encouraged that the natural route seems to work on me and encourages me to keep it up. I really think he trusts me when it comes to managing my medications! Such a good feeling, for a change, to be praised by him, (or any doc). I have felt in the past that he didn’t really know what to do with me, even though he’s never made me feel like a nut. I think he was encouraged that a tough patient is doing well. I left feeling good and with confidence that he is supporting my decision to do this.

I have SO got this! Hoping I don’t have to eat those words later, but I really think I’m going to be able to do it. Cheers! [smile]

24 Hours in a Hotel Room

Written on 4/10/14

I just need to document my most recent episode which was about a week and a half ago now. I was working out-of-town on night shift and staying in a hotel for 5 days. Day 3 I was at work and around 3 am began feeling severe heartburn that almost always precedes vomiting. I ate 4 Tums, felt a little better but still vomited. After vomiting I felt completely better and I had labeled it a little dyspeptic nausea. I finished my shift just fine. Went to the hotel and ate the hotel breakfast. Yes, I know I shouldn’t have eaten that crap, but it saves me money when I’m out-of-town so I stuck to biscuits and eggs. After eating I felt the nausea within 10 minutes. It quickly escalated to episode strength and I was vomiting before I knew it. Wal-Mart was literally next door but there was no way I could have gotten there. I called the front desk and asked for them to bring me up Gatorade. They did. It was a relatively mild episode as my vomiting was about 30-40 min apart. But I was just nauseous enough that I could not get to sleep no matter what I tried. Nothing worked, not even MJ. I think the reason it didn’t work is because I really couldn’t get a good enough hit from the piece I had with me. Couldn’t get enough of it in me at once basically. So, I repeated the vomiting every 30 min or so for a full 24 hours in the hotel room before I finally fell asleep for 3 hours and woke up ok. I spent about $25 in cash paying for all the Gatorades the hotel brought me because they were out of the machine for $2 a piece. I was afraid that I was disturbing the people next to me, so I was trying to heave and vomit as quietly as possible. I felt bad for having to vomit into the trash can that was full of trash so that I could stay lying in bed in attempt to sleep. I left a note telling them to be careful with the trash bags, but I had double bagged and closed them up for them. I bet there was 5 gallons of vomited Gatorade in that bag. Things like that bother me and make me so self conscious. I can’t stop thinking about that even though I know that I made huge efforts to prevent anyone having to deal with my “remains” lol. But it is what it is and I tried my best. I had to call in sick for my last day of work for the week while my agency paid for a hotel room and per diem for me to vomit in my room. That makes me feel terrible but I can’t help that either so I just try to forget it. This most recent flare up has caused me to be unreliable in regards to traveling for work. I hope this is just something related to the birth control. I still feel that the more time that passes since taking out the Nuva ring, I’m feeling better and like I’m less likely to have an episode. I might be proven wrong, but it’s a strong gut feeling. I still haven’t been able to get an appointment with the gynecologist yet, and I’m not even sure that will render results. But, I still plan to go soon to discuss the hormonal component if nothing else.

Two In A Row!

Written on 3/18/14

It’s been over a week ago now, but last Friday I had another episode begin at work. It was the same horrible story as last time, except I had to drive 1 hour 15 min instead of 40 min like last time. It was slightly less intense than last time, and I made it home thankfully. Stopped the episode at home when I got in the bed and smoked MJ. It stopped nearly immediately after smoking. No ER necessary, thank goodness. Then i slept, and woke up later with no nausea. (Oh, and we had dinner plans that I had to cancel with an old friend I hadn’t seen in years and was really excited to see her after months of trying to plan a time to get together. uhhg)

Usually, once I have one episode, I am good for about a month. At least two weeks, anyway. I was feeling ok the next day and had eaten a little. Not much energy, but I was good to sit and hold a conversation. We had plans that night to take my cousin out for dinner and dancing for her birthday that had already been postponed twice. She offered to postpone again, but I didn’t want to and gave the disclaimer that I wouldn’t be a dancing queen that night. We made it to dinner, where I ordered steamed veggies and broiled fish to be safe, but I ate a stuffed mushroom appetizer. I can barely resist those!!! I didn’t resist those, I guess. So, in 5 minutes I was in the bathroom vomiting and had to ask to go home halfway through dinner. Stopped it at home again after getting into bed and smoking MJ. Again. Same story.

I have never had an episode 2 days in a row. Yes these were mild, as I was able to stop them at home, but I’ve still never had that happen and thought I knew my pattern better. I thought I was safe for the night. But this thing changes, and that is something that has definitely changed. Maybe it was because they were more mild compared to other episodes, and it might have been like coalescence where the last one never really stopped. But it felt like it stopped!! I really felt good enough to attempt to have dinner out and maybe watch other people dance, but my body disagreed with me there.

I hate it when it changes!! I want to be able to predict my pattern… Not really much to say to that, except, “tough crap”, huh? [confused]

My First Episode of 2014 is History

Written on 2/15/14

*Warning:* This post gets a little bit graphic and gross. If you are eating, you might want to wait until later to read this 🙂

Last Friday. A week ago. The first ER-worthy CVS episode of 2014 is officially down in the books.

I was at work. At about 10am I ate a snack and shortly afterwards felt nauseous. Went to the bathroom and vomited. Thought, “No, please, no!” Stood there a few minutes and breathed. The nausea went away. Whew! But, in the back of my mind I knew I didn’t feel quite right and I was slightly worried, but I tried to push it out of my consciousness and continue working. So that’s what I did. Then at lunch, stupidly, I ate lunch. It went down ok until there was one bite left. Suddenly, the nausea was back and worse than before. Went to the bathroom and vomited. This time the nausea didn’t go away. It got worse. Vomited some more, and thought “oh sh*t”.

I walked out to let me co-workers know that I was sick and was about to have to leave before it got worse. I sat in a chair and tried to breathe for a few minutes. It was rapidly getting worse, and I didn’t sti there for long before deciding that I was wasting time, and I had better get my pukey self to the house before I became completely incapacitated. Called the sup and said I was leaving immediately. Got in the car and started driving. It was getting worse fast. Lucky I had a trusty emi-bag in the console. It became an extension of my face in a matter of seconds.

I had a 40 minute drive in front of me. This was not good. I knew that I shouldn’t drive, but the alternative was to become trapped 40 min from home in a poultry slaughter facility which would have made it necessary for co-workers (who don’t even know what CVS is) to care for me while on the clock. This is not cool on multiple levels. All the co-workers are subordinates. I don’t even like for family and friends to see me in episode, much less people over whom I have authority. I can’t stand the thought of poor, innocent strangers having to care for me like this. So I drove. With eyes glued to the road and mouth glued to the emi-bag. And I drove way too fast, in efforts to get home before I became completely incapacitated. About ¾ the way home it was completely obvious that I shouldn’t be driving at all. But stopping wasn’t an option bc that would have left me sick on the side of the road in the car. I needed a bathroom and to take my clothes off because I was completely drenched with sweat by this time. I was also in full-blown panic attack mode.

Oh, and the hubs was working 1 hour from home and 2 hours from my work, so calling him to come get me wasn’t a reasonable option either. I called him when I left work and let him know what was going on. He left work immediately and began driving to get home and take me to the ER.

It was the longest 40 minute drive of my life, I’m pretty sure. I mean, any time feels like eternity when in episode, and I have had my share of seemingly endless rides to the ER. But this was the first time that I not only had to endure the time riding, but I had to be the functional operator of the vehicle for the entirety of the trip. And let me tell ya, it sucked…. I wasn’t exactly conscious of anything other than keeping it between the lines, keeping my eyes on the road, and keeping the vomit inside the emi-bag. I think I should win some sort of driving award for managing to do this down a steep, winding mountain drop-off road. Executing turns and braking for other traffic were also EXTREMELY difficult to pull off safely.

FINALLY, I arrived at the house. Imagine me nearly running inside while bent over at the waist, carrying all of my bags and computer. I fly into the house and drop everything on the ground the instant I cross the thresh hold of the door. I never slow down as I head for the bathroom while yanking off clothes and leaving them in a trail behind me. I wrapped up in my trusty terry cloth bathrobe that helps dry the sweat off me and continued to be miserable in the wonderful privacy of my bathroom.

This post is about to get gross and graphic, so I’m warning you lol. I have always had some diarrhea at the beginning of episodes. Usually I get empty pretty quickly and I am left only to deal with the vomiting. This has been changing over my most recent episodes. I have much more diarrhea in an episode than before. The problem is that after a certain point I am utterly unable to control it at all. It’s like when you don’t have anything to vomit, and then you dry heave. My bowels would cramp and instead of feces I was expelling clear ACIDIC fluid. It was torture. It burned like my ass was on fire. I was panicky and embarrassed that I couldn’t control it so I put toilet tissue between the cheeks to catch it, which made my skin raw. It got worse and worse until my entire “area” was red, swollen, inflamed, and very painful. So much fun.

I was getting about 10 minute breaks between vomiting and I really wanted to try to fall asleep on my own instead of going to the ER. I’m so stubborn. It wasn’t stopping. Hubby got home and helped encourage me to go and get the meds to make it stop. So we got “hospital ready” and went. The past several times I have been to this ER it has been a good experience overall, and I’ve had the same doc treat me appropriately there several times now. He wasn’t there this day. I got someone else who didn’t know what CVS is, of course. I could tell from his attitude and manner that he was skeptical. I was in a panic attack and wasn’t communicating effectively. He left the room after only being in there for about 2 minutes and announcing that he would be right back as he left. We hadn’t gotten a chance to talk about the medications and dosages. He never came back. So I end up telling the nurse what I need. I try to explain that they have to give the dose that is in the Empiric Guidelines, which I gave them earlier, and not to be afraid of it. I knew they weren’t going to give me enough bc she just kept saying the names of the drugs that they would give, but she wouldn’t say how much. Just that they “are going to give me the meds”.

So, after being drained of nearly all my blood onto the floor by the new nurse who was learning to put in an IV catheter, I finally got the meds. I felt them hit and felt the relaxation – a little. And only a very mild decrease in the nausea. Normally I drift off to sleep in seconds after they give it. I knew after a few seconds when all I felt was a little relaxed that they didn’t come close to giving me enough. So, of course I spoke up and said so. But, I was sedate and slurring my words while saying they didn’t give me enough and it wasn’t working, so they thought I was being belligerent and seeking.

And every time that I would lose control of my bowels I would have a mini panic attack. They would all look at me like, “what do you want us to do about it?” Ok, I get that, but they didn’t even offer me comfort or anything. Just looked at me like I was an alien when I said that my arse hole felt like it was in a burning fire, and I couldn’t be still because of it. (Once we got home I put some skin ointment on it, which initially made the burning a million times worse, despite how I would never have thought that possible. But it helped after a couple of applications. By the next day I was normal again.)

They wouldn’t give me any more meds so I had to go home still awake, which I wasn’t happy about. They only reason it is worth it to endure a trip to the ER is knowing that I will be completely unconscious soon, and when I wake up it will be over. If I had known I would have just had to bear it at home anyway, I never would have gone. But if I have to look to the bright side, I probably got to sleep faster once I got back home as a result of the meds they did give me. They knocked the edge off, but only barely. It still took me several hours to get to sleep once I was back home in bed. Then, finally, I woke up, and it was over. The nausea was gone and I felt like a person again. It took me the rest of the week to feel normal again, however, as I had zero energy and needed more sleep than normal. I didn’t eat normally for a week either.

Thinking about possible triggers…. I sometimes don’t do well if I eat a lot of protein, and I had eaten nearly a pound of steamed shrimp the night before… I had started a new vitamin/supplement within the week before the episode… I have been back on birth control for two months now after not using any chemical method in about 3 years. In past years I had more episodes and other issues when I was on birth control, so I had come off it for awhile. I decided to try using it again. I feel it might be the most likely factor in any recent changes that could potentially have caused an episode. I have always been convinced that hormones play a major role in this process somehow.

Lessons learned this go-round include:

Talk meds and dosages immediately and don’t let the doc leave the room until you are done communicating all you need to and are satisfied they understand and are willing. (I say this every time, but when I’m actually in the episode it is much harder to think about what I need to say.)

Wear diapers/depends, whatever, so I don’t have to worry and feel embarrassed about the inability to control bowels. (I bought some and am weirdly looking forward to the comfort they should bring in an episode.)

Apply skin ointment to ass prior the acidic diarrhea to prevent pain and inflammation. Like baby butt paste for diaper rash.

P.S. Does any other poor, unfortunate soul have to employ diaper and butt paste interventions the way I have described here?

And with that, I end the post, and I hope not to have to wear diapers and butt paste any time soon.