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.

 

 

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The Frustrating Hormonal Link

Written on 11/10/14

A little background info on this post is that my historical patterns of episodes seem to indicate that my changing hormones are maybe my number one trigger next to positive excitement. I cannot tolerate exogenous hormones at all, and as a result have to use non-hormonal methods of birth control. I’ve researched and am trying to get some testing done that could shed some light on the relationship between my episodes and my hormones. What I’ve learned is that hormone testing is extremely hard to come by. For a lot of reasons, some of them good, some not. The information below is the very best I have gotten so far, in many years of research. It’s not much, but at least it’s something. And something can lead to something else. So, I’m hoping to follow this lead.

I had an appointment with my gynecologist today and got her to briefly discuss more intensive hormone testing throughout the month to try to see what things look like when I’m normal, and when I’m in an episode. She says that there might be “saliva” versions of the hormones testing still available at compounding pharmacies.

Here’s how it works:

I call up a pharmacy to see if they are a “compounding” pharmacy. Most likely these WON’T be big chains like CVS or Walgreens. More likely it will be a small privately owned family pharmacy that has been around a long time. Then if they are, I will ask them if they have saliva hormones testing kits available. If they do, all I have to do is go in to the pharmacy and talk to the pharmacist about having the tests completed. I asked 5 times to make sure, but they are certain that I do not need any type of documentation or prescription or anything for this. Anyone can just walk in and ask for this. Then, I think it is up to me and the pharmacist on how often I test my hormones. I’m thinking once or twice a week until I am clued in to any patterns, then I could hone into a particular week if I have reason to suspect something.

Oh, and guess what? Insurance definitely doesn’t cover this. It will be all out of my pocket, and they had no idea what I can expect in the way of price. At least in this small town, I probably won’t have too much trouble finding an old family pharmacy that compounds. Finding one that carries the tests might prove to be more difficult. I do have a couple of good friends who are pharmacists locally, so maybe if I bark up their tree I can make some magic happen.

Another topic of discussion was a future hysterectomy if we determine that hormones are playing that kind of role in my CVS. She kept saying that at my age she would want to leave my ovaries, and I kept telling her that would defeat the purpose, and that my ovaries are what have to come out to end the hormone craziness. Then she goes on to tell me that I wouldn’t want to experience the symptoms of menopause unless I have to. I begin to shake my head and think, “here we go” in my mind. I told her that any symptoms I experience will be heavenly compared to my CVS symptoms, and that I would gladly trade them any day. She continued in this motherly voice saying “hot flashes are bad honey, etc…”… Oh my, I nearly laughed loudly in her face. Why oh why won’t the doctors learn about what happens to us in episode??!!!???!!! Instead of being an ass  about her ignorance I contained myself to chuckling at them and telling them that they must have no idea what a CVS episode entails. Bring on the hot flashes baby, bring ’em!! Because I promise I will LOVE it compared to my episodes! I can tell they didn’t understand and/or believe me, but I just lost the motivation after that. I tried, I really did. But after that I was done and ready to leave.

Ohhh, it just kills me how every single time I visit a doctor it puts me in a terrible mood. Even the best of my doctors like this one is (excluding Dr. V of course). It is so annoying to walk into an appointment, knowing that I know much more about my disorder than my doctor does, yet I’ve gone to them looking for answers about it in some fashion. Answers that I won’t get. I get my hopes up every time. I shouldn’t do that. Why do I get my hopes up? I should be used to this by now. I should know that they probably won’t know anything about CVS or be able to answer my questions, and be pleasantly surprised if they do. (I realize I got some answers today, and I am pleasantly surprised I have an answer, just not happy that it will cost me an arm and a leg.) Instead I get angry about everything. Angry about the broken medical system and the “doctors” that it has created. Angry that I waste my money every time I go. Angry that I am a doctor myself and I can’t just order myself the tests and medications I want myself to have! Sigh… Forgive me, I needed to say all that or I was about to explode.

At least this place gave me info that I didn’t previously have. They aren’t the worst. I’m just frustrated. Some of the lower points of the visit went as follows…

At the beginning of the appointment, they had obviously not refreshed their memories on my history/conditions. I had to explain it AGAIN, and wasted valuable time I could have spent asking my questions. So, I was already clued in to their lack of knowledge on the CVS. But then they tried to make me feel like a dinosaur for requesting to be fitted for a diaphragm even though we discussed how hormones and IUDs are not an option for me. No one seemed to understand that it really is my only option They kept reiterating how outdated diaphragms are, and that no pharmacies will even carry them anymore. They have to order it straight to them, and I come pick it up later. They didn’t understand why I want it, even though I was explaining that I can’t tolerate hormones. They don’t think insurance will cover it, so I had to promise to pay in full for it if they don’t. Which brings me to another rant…

Why in the hell won’t my insurance cover it when I have demonstrated that I am unable to tolerate hormones??? Why in the hell doesn’t the DOCTOR decide what I need and what the insurance has to cover for me?? Why in the hell do I have to financially break myself each month to pay for the supplements, non-hormonal BC, etc… that are helping my diagnosed medical condition when every paycheck I receive has a portion deducted for insurance. What the hell am I paying for? Nothing. Absolutely nothing, that’s what.

The most frustrating thing is that I could be on the verge of figuring something out that could help me and others. Yet there would be no possibility of it happening whatsoever if I weren’t researching, learning about, and pushing for this myself. If not for that I’d just be at everyone’s mercy who tells me that hormonal links are hard to follow. So what if it is hard??!! Do it anyway! Think of what we could accomplish if it gave us big answers for those of us with hormonal links! But, alas, it is not so… I understand why. (Money.) But understanding makes me angry!

One more rant about this experience, except this one is for your amusement….

Today was the first time I have ever been mid-exam – feet in the stirrups kind of mid-exam, and the doctor gets a beeper telling her she has to go deliver a baby NOW. She and her assistant hastily apologized and left the room with me spread-eagle alone in the room and waiting for the nurse practitioner to come in and finish. Ummmm, is this common? Surely this has happened to someone other than me…?  I chuckled about it, but I really felt very exposed and abandoned! It was a new one for me….

I hope I didn’t make too many of you men uncomfortable today, but probably not many men clicked on this post anyway [wink]