Find us on Google+ Gastroparesis: Invisible Emergencies Series, Part Two - The Chronically Ill's Perspective

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Tuesday, June 26, 2018

Invisible Emergencies Series, Part Two - The Chronically Ill's Perspective

I have been sent a lot of stories from people suffering from Gastroparesis, who have a hard time when they go to the Emergency Room.

When people with Gastroparesis vomit, it can be a life threatening chance of roulette. My doctor told me once that I vomit so forcefully, one day I am going to tear my esophagus and bleed out. He said there is nothing he can do about it.

However, the way Gastroparesis patients are treated by the Emergency Room staff is why a lot of us dread going, and usually do not go unless a family member drags us there. I know from personal experience that a lot of doctors and nurses do not think Gastroparesis is real. There is a nurse I know through a friend, who is an Emergency Room nurse at a nearby hospital, who told me and my husband that Gastroparesis was not a real illness.

Then, there is the opposite. I have met doctors and nurses in the Emergency Room who treat me terribly because either they do not believe that Gastroparesis hurts, or they think I am a drug addict. Since doing research for this series of articles I'm writing, I ran across this article in particular. This may explain a lot when it comes to Emergency Room doctors' thought processes towards those who come in with Gastroparesis: http://www.serenityrehab.org/blog/information/addicts-using-gastroparesis-abuse-prescription-drugs/ which infuriates me. I hope that we can change the stigma on that.

For a previous article I've written comparing patients with a chronic and/or invisible illness vs drug seekers, please click here: http://www.emilysstomach.com/2013/07/gastroparesis-patients-vs-drug-seekers.html

If I go to the Emergency Room, it is because I am REALLY dehydrated and in need of fluids. Furthermore, I do hurt because of projectile vomiting, and doing that straight for at least a week. I used a lot of muscles projectile vomiting and was very, very sore. I even pulled a muscle while vomiting! I could not keep my medication down to even help with the vomiting. If I wanted drugs, I am sure I could walk down a street and get some, and not pay thousands of dollars to go to the Emergency Room, to get stuck eighty million times, for a bag of fluid and a pat on the head.

However, dehydration is SERIOUS and you definitely should go to the Emergency Room if you are dehydrated.


Source: http://lifesignsblog.com/2017/06/08/how-much-water-do-you-need-to-drink-every-day/


Here are the stories that have been shared with me by other Gastroparesis Warriors on their Emergency Room experiences. I hope that it will help bring awareness to this issue. You should never judge a book by its cover.


Taylor writes,


"I was recently diagnosed with GP, my pain started in October and I waited for a month to access if it'd just go away, I'm already disabled from a few chronic conditions so I have a month rule, if it lasts longer than a month I get checked out. Regular doc thought it was an ulcer, sent me to the ER because she thought I was bleeding. The ER Doc found no bleeding and no infection, in the past I've always had that infection with my ulcers, and it didn't feel like my past experiences with ulcers, so I told her that, and pressed that concern with her that I seriously didn't think it was ulcers. She spent maybe all of 10 min. with me, and ignored my opinion of the matter and concluded it was ulcers anyways without any proof. She sent me home with an ulcer med, and that ulcer med almost put me back into the ER I couldn't even keep water down because of that med! Luckily I had my gastro specialist appointment in a week or two by that time. I called my pharmacist and explained what the ulcer med was doing and he told me to stop it immediately because it can have that effect if one is dealing with something else in the stomach, and he was right. I stopped the med, and at my first gastro appointment my doctor told me she highly suspected GP but that we'd need to do some testing first, and started treating me for GP after my endoscopy because she saw all the signs, and then confirmed with the gastric emptying test a month later. My ER experience is the epitome of why I try to stay out of the ER, I know the doctors are stretched and can't know everything, but if something is unknown, maybe not taking a wild guess and sending someone home with questionable meds is the wrong approach. I would have been better off getting a iv for hydration and sent home with anti-nausea pills till my specialist could see me."



Melissa writes,

"It's happened often that the ER doctors do not take me seriously enough but the nurses are by far the worst! I went in a few years back and I was in incredible pain. My body was just not working and I looked like I was 10 months pregnant. I hadn’t pooped in 2 weeks either. I was throwing up bile. My doctor sent them a message that I was coming in at his request and that he wanted a contrast CT scan done immediately … well that didn’t happen. I told them my conditions and expressed that the Gastroparesis and the IBS-C together were really hurting me to the point where I couldn’t even walk. The doctor did an x-ray and told me I was constipated and he was sending me home. I put my foot down and said, NO… Do what my doctor asked. He replied that he didn’t have to follow the doctor’s recommendation and that he was discharging me. No blood work. No IV fluids. Told me to go buy Miralax and take it once a day. I was shocked. I was already on it and taking it 3 times a day at my specialists orders.

The ER doctor also told me to stop eating so much and I wouldn’t get bloated. ARE YOU KIDDING ME? The doctor walked out and the male nurse walked back in and pushed my stomach with a fist and moved it around and then walked out. He proceeded to sit down at the nurses station and they started to gossip about me and that I just wanted pain killers and a quick fix. That he wasn’t going to be the one to give me an enema.

Well…no one did. But it was my stomach that I needed help with. Not my bowels. I was getting a prescription for that from my doctor that evening. But it hurt so bad when he pressed on my stomach like that. I asked for the doctor to come back in and the nurse told me that he had real patients to see and wouldn’t be coming back in.

She told me to get dressed and he had my discharge papers. My husband took me home and I laid there and cried. While the medicine that I got for my IBS-C worked great…It didn’t help my stomach as it's not the same issue.

I have never gone to the ER again after that.

I have literally just laid there and felt like I was dying and cried my eyes out while my husband looked on and couldn’t do anything to help me except keep my hydrated. My GI doc won’t put me on any prescriptions for my Gastroparesis right now because I have irregular EKG’s and that puts me at risk. Ugh. I was on a medication before. A liquid and it was my life saver and the FDA pulled it off the market years ago so now I’m stuck. I am opposite of most and I gain weight very easily because most of the time my body thinks its starving. So stupid. As I type this, I can feel my stomach growing and becoming distressed and there is nothing I can do. I have cut out so much foods that antagonize it to no avail.

I tell the doctors where I’m living at now that I have Gastroparesis and some of them had to look it up online. REALLY?!? We need more awareness. I tell everyone about it and my little sister might have it. She’s getting tested soon."




Emily writes,


"I usually avoid going to the ER because of the ridiculous cost of the ambulance ride and because of stories like the one I am about to tell. A few years ago, I woke up in the middle of the night with excruciating pain. It was the kind where you feel like you’ve swallowed razor blades and your insides are tearing apart. I ran to the bathroom because I couldn’t tell if I had to throw up or use the toilet. I spent about 30 minutes violently throwing up and eventually passed out on the bathroom floor in a cold sweat (something that I am unfortunately very familiar with). When I woke up, it started again. Usually when I have a vomiting episode like that, it passes after I rest and smoke cannabis. Nothing would help this time. The pain was so awful that I couldn’t stop crying and worried that it could be something more than my gastroparesis. I genuinely felt like my organs were tearing to pieces. I lived at home at the time for graduate school and I called my mother from the bathroom floor and asked her to call 911. I told her I desperately needed help and couldn’t stand up and didn’t know how to make the pain stop. I was taken on a stretcher screaming in pain while the EMTs looked at me very strangely. I arrived at the hospital and they laid me in a bed where I dry-heaved between passing out for several hours as my mother begged them to do something for me. After they allowed me to suffer for hours it became clear that they thought I was faking it or I was a drug seeker because I just kept begging them to help take the pain away. My mother screamed at them that I have gastroparesis (I guess they didn’t bother to even check my file) and they finally gave me something to make the pain go away so I could get a few hours of sleep. When the doctor visited me in the morning she quite literally shrugged at me and said there was nothing she could do for my condition. She told me to keep managing as I had been and gave me some Zofran (anti-nausea med). This wasn’t the first time I had been treated like I was faking my condition or turned away as this doctor had done, but it was the most memorable time for me. It was humiliating more than it was helpful and I lost most of my faith in the healthcare system that night."



Maria writes,


"I live in Tempe, AZ. I was diagnosed with Gastroparesis at 16, Im 29 now. I also have chronic pancreatitis a few times a year. I go to the same hospital almost every time. It's only a mile from where I live and almost every nurse and doctor have gotten to know me over the years. That being said, I have had good and bad experiences at the Mesa Banner Desert Hospital. Depending on my flare ups which changes constantly I usually go once a month due to dehydration, vomiting, diarrhea, and abdominal pain. I usually get treated with fluids, pepcid, GI cocktail, Zofran (promethazine or compazine), and morphine or diladid. Sometimes I stay overnight usually if I'm still vomiting but I'm usually good to go hours later and get sent home. Did I mention that all my doctors usually know me by name? I think that has a big role to play when I head to the ER. I have had a few doctors, always someone that does not know me.. They ask me A LOT of questions and will sometimes deny me pain medication and or call me an addict. One time I was in a lot of pain and even my blood pressure showed that I was in pain. It was 145/ 99. I usually have perfect blood pressure so I pointed that out to this Dr. That mentioned that my blood pressure could also be high if I was "withdrawing". I was to weak to argue with her any longer and didn't care. Thankfully my mom was with me and walked around the emergency room until she found a Dr. that has treated me before. That Dr. Talked to mine and was able to get something for pain. She was angry and insisted that I was still a drug addict and made me feel low when I left the hospital. So I have had good and bad experiences before. I don't know if all hospitals are like this but whenever I do go to the emergency it shows every time I have been there. It also shows the medication that was given to me. I don't know if that means much or helps any but this is what usually goes on when I head to the E.R."



Elizabeth writes,


"Hello, i [sic] was diagnosed 5 years ago. My neighborhood hospital also knows me. One night stood out to me i[sic] was told by the e.r.[sic] doctor that I was doing this to myself. I was so livid I told him to leave my room and never come back. I was treated like a seeker of some sort when i[sic] all i [sic] wanted was a bag of I.v. fluids. I will never forget that day. I felt like there was no hope for me at all."




Source: https://s-h-ores.deviantart.com/art/No-Hope-349667350


Below are comments made about the healthcare system, emergency room, and how doctors and nurses treat Gastroparesis patients like drug seekers as summed up by my article here: http://www.emilysstomach.com/2013/07/gastroparesis-patients-vs-drug-seekers.html


My friend Juli writes,

"If I could ask for one thing from the medical professionals whether docs, nurses or other personnel, it would be to actually SEE and LISTEN to the patient in front of them rather than barely glancing at a chart and making assumptions based upon incomplete information. I understand it is overwhelmingly busy, there ARE patients who are malingerers, drama queens, and drug seekers, and dealing with the bureaucracy is a nightmare. I get that, but I think time would actually be saved, not to mention lives and money if there were more effort put into hearing and understanding what the patient is trying to say. Medical personnel may have lots of education and even experience, but patients are experts at living in their bodies."


My friend Brandy writes,

"Canadian ERs can be pretty bad, especially where I live. I have a huge tolerance to hydromorphone, but given enough it works. The last time I went into emergency, they not only treated me as a drug seeker there, but also when I was admitted through the ER and an inpatient. I had a doctor lie to me, he said they had a hospital wide policy not to give these meds IV. If I take these by mouth, they have no affect on me because of my gastroparisis. Then they told me that my only other option was IM (intramuscular), so that meant multiple needle pokes (every 4 hours). I'm a transplant patient and have a compromised immune system. That being said, it's not a good idea to constantly be putting open wounds on a transplant patient. I've actually gotten infections in my hands before just from the IVs they used to give me. Also, to clarify, I asked the nurse from oncology, a general surgeon and 4 ER nurses if there was the aforementioned policy in place. Not one of those people have ever heard of a policy like that in the hospital. Funny thing is, when I emailed the HR department, they told me the doctor was well within his rights to say that, plus within his rights to deny me the proper dosage/method of use for the pain meds. I was in there for a severe kidney infection, on IV antibiotics. I'm never going to that hospital again, and there is one other one that's a little further away but I'm willing to go there instead. And this wasn't the first time I've been treated like that at that particular hospital. The only reason I was going there is because that's where my kidney specialist is. She practices in the renal clinic plus has her own practice. The hospital I used to go there labels everyone as an 'inactive drug seeker'. If you go into the ER and ask for pain meds they then change the label to 'active drug seeker.' I'm not sure they change it if they offer you pain meds cuz[sic] they can clearly see you're uncomfortable, but that can also take hours depending on how long the doctor takes and how busy the ER is. I'm pretty sure they labeled me as a drug seeker as soon as I turned 18. Not only do I have to go to the ER for kidney infections, but back in 2012 I started having issues with my nerves/back, which actually started with the development of my gastroparesis. Turned out it was my tethered cord, but most times I went to the ER, they'd give me a prescription for T3s and send me on my way without further investigation. Took them till 2016 to take me seriously. By that time, I had lost complete sensation in one leg and was having on and off sensation in the other, and the finally took me seriously when I ended up severe back spasms in the ER, being unable to walk or sit comfortably. I now have constant chronic pain and obviously still have the gastroparesis."


My friend Karen writes,

"Luckily my doctor has written a care plan for when I end up In The ER. They are instructed to provide me w [sic] dilaudid, reglan, and benedryl, and Ativan if I am in panick [sic] mode. I have to say that my panic has gone down a lot knowing that the care plan is in place and I don’t have to worry about how I’ll be treated. I do still have asshole nurses giving me an attitude sometimes."


My friend Marlee writes,

"I went to the little clinic at Kroger here in Ohio one time in hopes for them to give me an ANTIBIOTIC for an abscessed tooth I had that was making my face swollen and she looks at me dead in the eye and says with a huge attitude 'I can’t give you pain meds...' I looked back at her and said 'lady I’m not here for pain meds. You can clearly see that I’m doing just fine without them. I would just like an antibiotic so I can go to the dentist and get this fixed. But you obviously think I’m coming in here to get something else' I walked out. I was so pissed that she degraded me and looked at me the way she did... like I’m some kind of druggie... it really hurt my feelings. It really is awful, and it makes us not want to seek help again because we fear that we will be treated the same way."**

**Author's Note: I hate it when the medical staff at the Emergency Room make you feel like less of a person when you need some help. To me, a tooth infection would count as an emergency - at least for some antibiotics until you can see your dentist! There are people who have developed sepsis (blood poisoning) that way and have passed away from it. The first celebrity I can think of that had that issue was an actor who was in Angel: Andy Hallett.


My friend Alexandra writes,

"I went to the ER one time for the second time in a week because I couldn't keep food down and was so dehydrated and in so much pain. I hate going to the ER and I hate being stuck with needles. I learned that my ER doctor had gastroparesis as well and so I felt comfortable with her and let her know I was in pain, but never asked for anything and never eluded to wanting a drug prescription. After I returned a few days later because I still wasn't able to keep things down, apparently she went into the system and called me a drug seeker, and this information was all available to my ALJ for my disability hearing. They used it as grounds to deny me, because my ER doctor ... with the same illness as me ... called me a drug seeker. It also happened in the hospital I was diagnosed with gastroparesis, right down the road from my gastroenterologist... They had to give me 4 bags of fluids because I was so dehydrated, but I still got the side-eye as if I were a drug addict."


My friend Rebeccca writes,

"It became so impossible to get pain medication that worked in Colorado that I just gave up. And now I live in near constant pain, every day. I just stopped talking about it."


My friend Juli writes,

"Would that doctors and nurses actually see and listen to the patient in front of them before jumping to put us into a box![sic] Would that politicians/ and bureaucrats actually sit down and think about what they are doing and think about unintended consequences of the laws and policies they pass GRRRR"



According to Vanessa Blevins from The Mighty (her Facebook Page can be found here: Parenting Through The Fog),

"To the Emergency Room Doctor Who Dismissed Me as a Drug Seeker

I understand. I do. You doctors are under a lot of pressure these days about your opioid prescriptions. It’s been all over the headlines. I also understand that in the emergency department, you see people coming in for a quick fix. I know the drill. I’ve ended an intimate relationship over my own pain medication going missing from my purse. I get it. However, I do think there are actually a few things you don’t quite 'get.'

For starters, I’ll note that my main complaint at triage was not pain, and while I did mention that I was in pain during the course of my triage exam, I also expressed the fact that I drove myself and therefore did not want mind-altering substances so I would be able to drive myself back home.

I came in with vision problems, extreme pressure in my head and what I swear is increased pressure in my spinal column. I had numbness and tingling in my hands and feet, vertigo, hand tremors, and my legs partially stopped working for a moment today. They went heavy and limp and half numb. Those might not be emergent symptoms to you, but they freaked me out! I’m a single mom of three kids. I can’t have body parts randomly giving out on me without explanation! I came as soon as I could, when I had time, and hopefully you would have time, to run some tests. I wanted to leave with answers. What I left with were vision problems, extreme pressure in my head and spine, hand tremors, and legs that went funny as the discharge nurse was walking me out the shortcut. At least the nurses were freaking awesome, as always!

Instead of ordering a simple test, you completely dismissed me. Even after I told you I wasn’t there for your drugs, you belittled me. Instead of providing care and compassion for someone who has been desperately fighting through bureaucratic red tape while still hoping for treatment, you added a whole new mess of red tape. Now thanks to you, I’ve got an ER visit as a drug seeker in my medical file. That is going to affect how I am treated at every emergency room I go to, no matter why I’m there. I actually do have several medical conditions which are commonly treated with narcotic pain medications. I also have a few conditions that cause vomiting. There are times when I can’t keep down my medications. So next time I have to go to the ER because I’ve vomited my legally prescribed and responsibly taken medication, instead of being treated with care and compassion as a person who is facing a lifetime battling chronic illness, I’ll be treated like an addict looking for a fix.

In the chronic illness and chronic pain community, we measure the energy it takes to get us through our days in spoons, and I used spoons I didn’t have in order to drag myself out and go. Did you notice I was wheeled in by medics? That’s because I nearly collapsed in the parking lot, but that’s not emergent. Move along. Nothing to see here. Just a druggie wanting a scrip. I’ve been putting this thing off for months, and no wonder! I’m hurting even worse now, from sitting on the gurney for so long, waiting to be discharged after receiving no medical care.

No, you don’t know what it cost me. I did tell you I had to wait on a sitter for my kids, but what I didn’t tell you is my daughter was still awake when I left. She’s 2 and we’ve never spent more than an hour or so apart in her entire life. Do you have any idea what it cost me to walk out the door and leave her behind, crying that she wanted to go with Mommy? How unbelievably selfish I felt for leaving her? As a mother with chronic illness, I’m often putting my own needs aside in order to care for my children and it took quite a bit of courage to talk myself into leaving my daughter in tears, in order to go take care of my own needs. But I told myself, 'You’ll have some answers when it’s over, so it will be worth it.' I’m not used to being so drastically wrong.

People like me who have an invisible illness often spend years of our lives having doctors tell us it’s all in our heads or we’re making it up for attention or we’re drug seekers until we finally find a doctor who has enough training and compassion to listen to us long enough to find an answer. Even after a diagnosis, many people with chronic illness are still left fighting for recognition in the medical community. Even with medical codes in our charts and diagnoses we can’t even pronounce, and a list of ailments recognized by the ADA and the Social Security Administration, even then we’re faced with judgement, discrimination and mismanagement of care by doctors like you. It takes me weeks, sometimes months, to build up the courage to even make an appointment with a new doctor. I have anxiety attacks on the way to every doctor’s appointment, even ones I’ve been seeing for years. Doctors like you are the reason I’ve been putting this off for so long, and the reason I didn’t want to go tonight. And you’re the reason I wish I had stayed home in my comfy bed and suffered in peace.

I want you to know that even if I had been a drug seeker, I still deserved decent medical care and respect. I had other issues besides pain. I complained of vision problems and sensitivity to light and you stood with a fluorescent light behind your head and expected eye contact. Even if you had no respect for me as the person you suspected I was, you were still supposed to be a professional and perform your job. I got more helpful and courteous medical advice from the discharge nurse who spent more time with me and showed more care for my well-being than you did.

I know you aren’t going to see this. I know you aren’t going to learn anything from tonight’s events. But I know I learned a couple of things. I learned I’m stronger than I thought, to be able to walk out of there with limited use of my legs but my head held high. And I learned I actually can be more passionate about patient rights. I have a feeling that my words are about to reach a lot farther than I could imagine. I know my story isn’t the only one of its kind. Tragically, I’m positive it won’t be the last. But if I share my story, and the next person shares their story, and we all keep sharing our stories, maybe eventually, someday, enough people will get pissed off that things will start to change and doctors who dismiss patients’ pain will be out of a job. Until then, my readers and all their friends are more than welcome to share this.

A version of this post originally appeared on Spoonies for Life."




Source: Invisible Disease Stuff




According to a guest writer for "The Unbroken Smile," Elena shares her story below,

"The Day I Was Labeled A Drug Seeker Because Of My Chronic Pain
October 17, 2017


The Day I Was Labeled a Drug Seeker Because Of My Chronic Pain – Five months ago I was given the wonderful news I was pregnant. I was ecstatic. I already have a 4 year old from my previous marriage and couldn’t wait to have another bundle of joy to adore for years to come. Everything was going wonderfully up until around 10 weeks. I was told the baby wasn’t growing and was implanted inside the C- Section scar. There was no saving either of us. If I didn’t choose to terminate it could end my life. So I reluctantly and with a heavy heart, chose termination in hopes I would get another chance and the soul would return to me for a second chance later in life.

I didn’t have health insurance at the time and my application wasn’t being processed. With little knowledge on my options I chose planned parenthood. Its a day I will never forget. The nurses were cold, I was so afraid. Outside was filled with protesters. “You’re a murderer” they repeated as I passed. I was, and I’m sorry. I paid and began the procedure with no medication. It’s a pain I’ll never forget. Both emotionally and physically. It was cold in the operating room, and the nurses seemed irritated every time I cried in pain. I was told to be quiet. It felt as though my insides were being torn out. The endless cramping, wrenching pain, the emotional toll topped it all. After I was rushed to a waiting room and given crackers. I voiced my concern about pain as my menstrual cramps were hell on its own. I was told the procedure was painless and so will my recovery. I knew they were wrong, and boy were they. I was given a bag of contraception and a look that said “I hope you learned from this” and a have a good day smile.

My drive home was agony. My stomach hurt, I was bleeding heavily, my heart mourned and the cramping was something words can’t express. I had a two hour drive home. I stopped to see my brother for some comfort and during our coffee adventure I chose to try something called Kratom for pain. I went home and crawled into the arms of my fiancee and cried. He held me silently but I could hear his heart breaking.

Days went by and the pain didn’t let up, my bleeding ceased quickly. I started to feel bloated. After days of thinking it wasn’t serious enough to go to the emergency room I finally swallowed my pride and left. I dropped my fiancee off at work and headed over. I explained it all three times to different people. It was 3:30 pm, and they started with IV fluids, CT scan and an ultrasound. I had a feeling they weren’t taking me seriously and at this point I couldn’t even take myself seriously. It’s nothing I told myself. 6 hours go by waiting alone, and not even offered pain relief. Finally after the long wait in a cold empty room the physician and nurse entered my chamber of solitude. He grabbed a chair and sat at a distance while the nurse administered a nausea medication via my IV line. 'I’m baffled you chose planned parenthood firstly. They’re butchers.'

I sat in silence, and shame.

'After reviewing your results from lab and imaging, your uterus is the size of a 13 week pregnancy. Your uterus is filled with lots of blood and infection. We have the OB on call coming in to talk with you. What she wants to do is what we call a dilation and cutterage.'

Fear took over. All I could think of was laying awake, being told to be quiet and that wrenching pain. I expressed my concern and told them they would not come near me. I was not doing that again. At that point a beautiful young doctor came in and introduced her self. Immediately I told her exactly what I told him. She looked concerned, apologized for my terrible experience and assured me I would not be awake or feel a thing. We talked after care and medication for home. For some reason I felt safe with her. She had called my partner and began calling the surgery team. The cramping hurt beyond anything I’ve ever felt.

I finally spoke up and asked for some pain relief. A look of surprise came across her face and asked if I had not received any. She ordered IV Dilaudid and I was down to a 2 pain scale when anesthesia arrived to take me. I began in the operating room near 10 pm on the 4th of July of all days.

When I came to, I felt extreme abdominal pain and soreness in my lower region. I was relieved. It was finally over and free to go home to my comfortable bed and lovely partner. She sat beside me, and explained the procedure was successful BUT she pulled 9 containers and I lost too much blood to be released. That I may need a transfusion. I cried and cried. I was given morphine and my partner was brought in shortly before being brought up to the depressing OB floor. I slept soundly, minus being poked throughout the night. I was released at 7 am, still pale and weak but I insisted. I was given iron pills, antibiotics, ibuprofen and oxycodone.

It was over. Finally over.

Throughout the next week I had a dull ache and ended up calling her office to inquire about the pain. It was a Friday and late so she refilled my oxycodone and an antibiotic until I seen her again. By the time I seen her again the pain was still lingering, a thorough exam was conducted. I was sent home with more pain medications and she was concerned with uterine infection. The pain never let up. Weeks started going by. Pain increasing, pain during intimacy, horrid menstrual cramps with little blood. She was booked every time so ER visits became the normal under the advice of the OB nurse. They treated me wonderfully at first. The first couple times they examined me.

Fast forward 3 whole months. I acquired a tooth abscess and went to the dentist. He couldn’t pull the tooth with the infection and couldn’t fit me in for a month for extraction. In that month I would call because of pain and draining. His advice was to get to the ER since policy prevents him for calling in prescriptions without a visit. This repeated 6 times total. 3 visits were the same ER, one was in a neighboring town as I was visiting my fiancees grandmother. They refused to even look. I contacted my dentist to inform him and he requested I return, by that time I was home so returned to the previous emergency room that I usually go to. There I was given antibiotics and 10 5mg norco. I was sent back a week later for a dental block. Things changed drastically. The physician was rude, argumentative and explained they cannot give me narcotics. I told him I was sent for a dental block only. He administered it and rudely sent me in my way. It continued like this until removal, they were rude and not very compassionate. After removal I ended up with a dry socket, infection and sinus infection.

I visited urgent care and the physicians assistant was rude right when meeting me. I was told they could use a paste to pack it when I spoke to my dentist. I asked her about that and the topic quickly became about narcotics. At this point I was in tears, humiliated and confused. I got up and was ready to leave as she forced a prescription in my hand: 4[sic] 10mg norco! She then stood there and said she pitied me and gave them even against her colleagues recommendation. I did not fill it, and it remains crumpled in my back seat.

The infection and dry socket healed with the help of my dentist’s packing, antibiotics, nasal spray and some Tylenol 3. After finally getting into him. I explained what happened he replied with 'I know you aren’t an addict' that felt good after everything. This was a few weeks ago.

Today I awoke to the usual abdominal pain. I avoid ER and physicians hoping it would pass. It was a stabbing pain, a pain that made it hard to walk. I laid there in tears in the fetal position for hours while my partner looked over at me from his game with sadness. He felt helpless. He knew how the ER has been, and my OB being booked. Which I have an appointment with her finally in four days.

I couldn’t wait.. Something was wrong. I couldn’t see through the tears, I couldn’t hardly move. I reached for my phone and called the hospital nurse line. A wonderful nurse answered and I explained the surgery and pain history. She mentioned endometriosis, and uterine or cervical scarring from having a c section and the two procedures. She recommends I be seen within 8 hours.

Reluctantly both myself and partner get in the car to return to the ER. The one where my OB works in case they need to call her. My partner has only heard whats happened with the other ER docs figuring me a drug seeker. This time he would witness it…

We were taken back by a lovely nurse and the physician was right in while she was getting my blood pressure cuff on. I explained my history, the pain and all the other symptoms. Even told that a nurse sent me here. He listened and was very kind. Listened to my lungs and pushed on my stomach enough to make me jump. He left and ordered labs. Quickly lab came in and started an IV to draw blood and for medication. I was so relieved.

Finally someone was taking me seriously. The nurse returned, informed me they will be giving me fentanyl and something for nausea. A woman came in to have me sign a medical records release the doctor wanted. I was confused as to why he would need it as i thought they were all linked and my procedure and OB records were from this hospital. I signed.

5 [sic] mins later the nurse returned and said instead of fentanyl he wants to give torodol instead. I was okay with that and nodded. She asked me for urine sample, and had no problem. After I was given a CT scan and a internal ultrasound. The ultrasound was painful, and was drawn out. I felt like a giant child crying on the table. I was desperate to find out what was wrong.

I was scared. Scared that if it progresses I may not be able to have another child, and would end up with a hysterectomy like I read online from many women in the same situation. I had also read that even with imaging they cant see Endometriosis or Ashermand[sic] Syndrome. Most had to have invasive surgery. I was more than willing to try that. Just please, make it stop.

'Whats[sic] your pain level after the torodol?' My answer as when I’m in pain is honesty with a little sense of humor. 'Well between a 1 and a 10 my arm is being torn off I give it a 5[sic]' my fiancee just smiled. The nurse was unamused and her demeanor changed towards me. I held my stomach, hunched over and just smiled. My fiancee rubbed my back in an attempt to comfort..

A few hours later the physicians assistant returned saying that my CT and ultrasound came back in 'pristine' condition. He stood there with his arms folded, I was doubled over in pain my eyes watering, and fiancee at the edge of his seat. 'There was a slight hint of a bladder infection' my heart sank. What’s wrong with me? Why am I feeling like this? I doubt a bladder infection can cause me so much pain for 4 months…

I was just checked two weeks ago and nothing… Then it happened. 'What I don’t understand who is your primary doctor? Seeing as you bounce around a lot and one day it was two different emergency rooms in the same day[sic]'

I explained it all. That we were homeless and staying everywhere we could and the day was two different ERs because I had made it to my home area when I was told to go back in. The first ER was nearly 2 hours away so I went to the closest. He smirked and sort of scoffed.

Rattled off how they don’t treat pain to drug seekers, and on his way out said, 'But we will give you some ANTIBIOTICS[sic]' I felt tears building in my eyes as the door slammed. My fiancee was speechless as he’s seen how I am at home. We were discharged with antibiotics.

As we got to the car I took my glasses off and sobbed in the drivers seat. I felt humiliated. I was scared. I was embarrassed. The pain remained as if a butcher knife was being stabbed through my cervix. What will happen now? What are my options? Will anyone help me now? What did I do to deserve this label? A half hour passed as we sat in the parking lot. I sobbed uncontrollably, opened my door because I could feel the contents of my stomach ready to spill any moment. My fiancee picked up the phone and found me some pain medication. He had never seen me cry, maybe tears forming while complaining or wiping away little drops.

We left to pick it up. So this is what it’s become? It was then I realized how many people probably result to street drugs or buying them on the street. Pain is the biggest reason people visit the emergency room.

A lot of us receive the junkie label. We are all just seeking relief. No one deserves this, no one deserves to be unheard, made to feel as if the pain isn’t real, and judged without anyone knowing whats really going on. The signs of a drug seeker can also be logical. We all move around, some say the pain is a 10, some are so frustrated they demand some form of relief. It wreaks havoc on your body and soul. I was told to visit the emergency room or urgent care for my relief by medical professionals and in turn it got me a big red label inside my chart. What can I do? My only hope is that on Tuesday she will hear me out. Otherwise it’s years of constant pain and who knows where a path like that will lead. I can only hope for the best. For myself and anyone else in the world who is in a similar situation."



Source: The Spoonie Blog



According to the Spoonie Blog,

"What to Do When You Have to Resort to the Emergency Room (When You Have a Chronic Illness)


A trip to the ER is no fun, no matter how you spin it. When you’re a chronic pain patient or someone with a chronic illness that can cause bouts of severe pain, it can be a complete and total nightmare.

A patient with chronic pain can help the Emergency Room staff to understand that their medical problems, especially pain, are a legitimate emergency by following a few guidelines and suggestions that will lessen some of the unpleasant drama of going to the ER.

Always bear in mind that the Emergency Room is a last resort, and Urgent Care will almost always turn away a patient with a chronic illness. Hospitals are so wrapped up in covering their asses legally that they have started turning away chronic pain patients much like Urgent Care does, even when the need for treatment is real and immediate.

Your regular healthcare team, especially your Primary Care Physician, is by far your best bet for getting help managing a chronic condition that is spiking out of control, but sometimes the ER is the only option. When that happens, here are some tips to help make your experience more manageable:

Make sure that you have a regular physician who treats your chronic pain. That’s a relationship that all chronic pain patients should establish before they ever set foot in an emergency room. Without this all-important steady doctor-patient relationship, the rest of this list is not really possible. In terms of seeking out aid in the Emergency Room for a spike or flare of pain having to do with an ongoing condition or problem, even having a bad doctor is better than no doctor at all. If you are having trouble finding a primary care physician who actually does care, the best place to start looking are local and even national support groups for your condition(s). They will have lists of hospitals and even specific doctors in your area who have been a good match for others in your situation. If those doctors are not taking patients, don’t be afraid to ask their staff where they would recommend going or if that doctor can make some recommendations of physicians they know to be effective at treating your condition. This search can take a while, but always keep a PCP on file, if you at all can. Not having a primary person who writes your prescriptions and handles your referrals makes the staff in an Emergency Room nervous no matter what.

Show that you have tried to contact your regular doctor before you go to the ER. If you have been in pain for five days and have not alerted your doctor, the ER staff will question how bad your pain really is. Even if the pain struck out of the blue that day, make an effort to contact your regular doctor first. ER staff will be more sympathetic to patients who have called their doctors and been told to go to the emergency room because the doctor was unable to see them. At least you’re showing you made an effort and only using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication. This is important, as unfair as it is, they will not give you proper care if you are using the ER too liberally. Having your physician back up your story is never a bad thing, it helps establish legitimacy and urgency, and can help push you through to getting treatment sooner rather than making your wait for four hours “just to make sure you’re really in pain” before giving you any medication or imaging.

Bring a letter from your doctor. A letter from your physician, with a diagnosis and current treatment regimen, is a logical, completely reasonable thing to carry with you, particularly if you’re on a regular dose of opiates in today’s atmosphere of distrust and disbelief of pain patients. Always make sure the letter has your doctor’s name and phone number. That way, if ER doctors want to contact your physicians, they can. This is especially useful if you’re traveling or going to a hospital that you have never visited before.

Bring a list of medications. Bring a list of your medications, instead of relying on memory. Usually the hospital will already have access to the list of everything that you have taken for the past several years, so don’t try to lie about it, you will only hurt yourself in the long run. Always be honest about medications you have taken or have been prescribed. Work cooperatively with emergency room staff. It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it. Being loud and distressed will call negative attention to your actions and makes hospital staff that much less sympathetic. You might be in agonizing pain, but the staff is going to be more concerned with “drug seeking behavior” than your well-being. So rather than demand things, try to work cooperatively with the staff, even if they’re not being cooperative with you.

If you have an alert card or pamphlet explaining your condition, hand it to them and ask for it to be put in your file. For instance, I keep a card in my wallet explaining that I have Ehlers-Danlos Syndrome and detailing the worst parts of the illness and information that is pertinent to an emergency. I also listed my most severe medical allergies around the border of the card in big black block letters. It’s important for the staff to know what is going to cause more pain & what may help. If you have a rare condition or one that is frequently misunderstood or which is conventionally thought to not cause pain, bring a relevant pamphlet from an awareness or advocacy group with you. Consider buying one of the brand new USB alert bracelets, pendants, or wallet cards. These plug into a computer in an emergency if you can’t speak for yourself, and they can be uploaded with as detailed medical information as you want, from medical history and current doctors with phone number and addresses to info like allergies, current medications, current medical concerns, and alternative treatments/supplements as well. Most manufacturers understand that a computer might not be nearby in an emergency and have a phone number printed on the back of the bracelet that you can call to access the information as well.

Ask for a nurse advocate or make sure someone is with you. This will help you when trying to explain things to the staff. It helps to have another person there to advocate for you.

If at all possible, use the same Emergency Department as the last one you went to, your pain will be that much more believable if you always use the same place. Plus, you might actually get doctors to take an interest in your chronic pain condition and maybe even other conditions that can cause a chronic illness patient to end up in the ER. Think about the ramifications that could have down the road for future patients!

Finally, since there are a lot of easy-to-forget details in this list, especially in the fog/panic/blacking out that happen whilst in horrific pain, I like to keep a folder handy with all those details written down, as well as a copy of most everything I need to bring with me. It isn’t always updated with the newest things I’m taking, so I bring the bottles themselves if I am on anything different since the last list was written. Being organized shows the ER team that not only do you take your condition(s) seriously, but that you have done all you possibly can to avoid the Emergency Room and to only use it as a very last resort.

About two years ago I was turned away from an ER without treatment by an extremely ignorant physician (after toughing it out all night crying and screaming at home), I had to contact and be seen by my pain doctor the next morning and then was sent right back to the same ER, only this time I was told to have them call my pain clinic when I got checked in. I did not want to go back there, but things went a lot smoother the second time, despite my apprehension. I was given the correct sedatives for once, and no one yelled at me or gave me super judgmental looks. I was treated for pain, monitored, and released without being asked to pee in a cup or otherwise treated like an addict. It was the only decent Emergency Room experience I have ever had, other than being in constant, black-out, vomiting, excruciating, unrelenting pain for almost 48 hours prior to finally receiving treatment and not sleeping a single hour of that time, all from an Occipital Nerve Block injection that was supposed to be a diagnostic tool, gone horribly wrong. (Hint: If your gut says “Do not do this, it isn’t safe” then listen to your gut, or it probably isn’t going to turn out well. I knew in my soul that the injection wasn’t going to be a good thing for me, and I don’t even have a minor fear of needles.)

I haven’t been back to the ER since, I have to admit I have stayed at home through even worse pain than that episode since then. No part of my soul trusts the Emergency Room to treat me, as a 26 year old fibromyalgia and chronic fatigue syndrome patient with occipital and trigeminal neuralgia, Spina Bifida Occulta, Joint Hypermobility Syndrome / Ehlers-Danlos Syndrome, with damaged vertebral discs at the top and bottom of my spine and everywhere in between, just to name a few of my chronic pain conditions. None of that matters because what they see is a 26 year old who usually hasn’t showered in days, is twitchy and fidgety (pain makes me move nonstop sometimes), sweating profusely (a fibro symptom having to do with autonomic nervous system dysfunction or dysautonomia), has a hard time walking in a straight line, and usually I am extremely angry or panicky, one or the other. There isn’t a lot of sympathy for me if I don’t do absolutely everything right when I go to the ER.

It’s certainly not fair or acceptable, but the Emergency Room just is not cut out for dealing with us; the tough cases, the ones who can’t be 'fixed' or 'stabilized' because in hospital staff eyes, we are already stabilized and not in any immediate danger. Yet pain is dangerous. Chronic pain over a life time is more damaging to the actual structures of the brain than taking hardcore opiates every single day for the rest of your life. That isn’t to say that there isn’t some middle ground to be found here. I do not advise hardcore opiates for chronic pain on a daily basis, especially at my young age, because if I take heavy opiates now, years down the road when I need surgery or dose titration, eventually there isn’t anything else to elevate to by the time I’m in my late 30’s. That’s not how I want to end up. The only painkillers I currently take are tramadol and medical marijuana for breakthrough pain and seizure activity.

I have learned to make do, but it took years to figure out just how little I can do off of painkillers without my condition deteriorating. I’m still trying to adjust, trying to find the sweet spot between too much and not enough, and knowing that life with a chronic illness will always be a delicate balancing act.

I’m not just saying that heavy opiates are a bad idea, I actually used to take anywhere from two to ten 5mg oxycodone every day while I was working, and while it did not take the pain away, it made me more able to do things, more willing to put myself through pain over and over again all day long. I could still drive at that time, purely thanks to opioid medications, but I don’t think it was healthy to push so hard that I had to pop pain pills like mints, just to stay upright and not cry through my whole shift. At one point I was even on morphine every night to sleep just a couple of hours. Clinics were offering me methadone, which I vehemently turned down.

I had a rough, rough few months when my first visit with a brand new doctor ended with him taking me off oxy and morphine all of a sudden in the middle of a flare, no weaning, just completely off of opiates (and chronic fatigue/ADHD medication at the same time too) cold turkey without even the slightest heads up. I wasn’t even given tramadol by that asshole. I had to call crying in pain four times in one week before he would even write a tiny prescription for 12 (yes, one freaking dozen) during a two month long flare up! So humiliating. He also told me not to go to the ER no matter how much pain I was in. What a complete idiot. His favorite phrase was “at least you’re not in a wheelchair”. I could barely contain my hatred every time he said that or my other personal favorite: “you are a perfectly healthy young woman”. Not my weight, my blood pressure, my mental health, or my chronic pain conditions were healthy about me, so I was partly just shocked he couldn’t think of any reasons I wasn’t healthy.

Yes, middle ground. I understand that 'as-needed' for a chronic pain patient can mean literally anything, from almost never to pretty much always. So I say with caution and leaning more toward the almost never side of things, 'as needed' pain medication can save your life. When you need it, and you really need it, you know best, and you deserve to be treated correctly, efficiently, and even compassionately by ER staff. The above suggestions should help cut down on the emotional trauma that people with chronic pain often associate with going to the Emergency Room. In our greatest time of need, it would be nice to actually be able to count on getting help when we seek out this last resort in our coping toolbox."




Source: In Image







Please, keep your Emergency Room stories coming, because you never know who might be reading this blog or how many lives your stories may touch.

If you are interested in sending Emergency Room Stories (yes, you can send more than one), please email them to emilysstomach[at]gmail.com or you can PM my page: http://www.facebook.com/emilysstomach/.

I would like to include as many stories as I can for this series because everyone deserves to have their voices heard!




Source: Pain Warriors





Sources: Mostly located on the images above




The first part of this series can be found below:
Invisible Emergencies, Part One - The Personal Story Perspective: http://www.emilysstomach.com/2018/06/invisible-emergencies-series-part-1.html

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