I went to my local ER last week because I had been dealing with a migraine for almost two weeks. Sadly, is not uncommon for me to end up in the ER for a migraine. In fact that usually happens at least a handful of times every year. Unfortunately I generally end up being admitted for said migraine at least a couple times a year. So I know how things work in this ER and Hospital. Especially since I actually worked as an RN in this hospital for 9 years. But this time was different. I had the worst experience I have ever had in that hospital. I have NEVER been treated as poorly by as many medical professionals in such a short time span as I did that visit. And that’s saying something because over the last five years I have been there MANY times and have been cared for by MANY nurses, physicians and other providers. Due to the fact that I am no stranger to the hospital, and the fact that I have MULTIPLE invisible illnesses I am not unfamiliar with being looked at like I am drug seeker. But this visit took that to a WHOLE NEW LEVEL.
I had barely made it into the room in the Emergency Room when this male who I assumed was a nurse came in and without telling me who he was or anything his first words were “I see you take X & Y at home for pain did you try either of those?” Okay, fair question. I calmly explained that they can cause rebound headaches so I don’t always try them for headaches. He proceeded to tell me that I wasn’t going to be receiving any narcotics while I was in the ER that day. He then went on to ask me what has worked on my migraines in the past. My mom answered that question as I was not totally able to think straight after that long with a migraine. She told him that a low dose of Ketamine has worked for me really well for me in the last. Continuing on to tell him the last time I received it the nurse had never heard of it being used for migraines either so the Doctor took him aside and showed him literature on the studies that have been done. Those studies show that Ketamine at a low dose works well for migraines. And before she finished her sentence the nurse shot that down and said there was “NO WAY” I would be getting that today because its a sedative and not for migraines.. At this point I didn’t know what to even think. Honestly, I was ready to leave and say forget it. But that wasn’t the last run in with that nurse I would have before I was admitted.
I had a port placed three years ago due to the fact that I don’t have good veins anyway and then I took years of high dose steroids which killed the veins I did have. So I always request that my port be accessed. He REFUSED. He said I had great vein and placed a peripheral. I wasn’t in any condition to argue. Because he was so asinine I ended up with five sticks which should have been one. But I did enjoy when the ER doctor put him in his place and let him know that he would in fact be giving me Ketamine for my migraine. HA!!!
I was really hoping that the Ketamine would work like it had in the past and I would be able to go home. But it didn’t……. So they called a hospitalist to come in and see me so I could be admitted to the hospital. As he walks in the room he introduces himself and announces “I DO NOT GIVE NARCOTICS FOR HEADACHES, JUST SO YOU KNOW! Again, that word had not come out of my mouth since I arrived. He like the nurse was making an assumption of why I was there based on what he saw on the chart, without actually seeing 94 talking to the person behind the medical record. I really hadn’t even thought about asking for any narcotics because I know that it can actually make a headache worse. He asks me a few questions and says he wont be admitting me its a neurology issues, and leaves. The nurse I loved so much comes back a few minutes later to tell me that they were taking me upstairs. When I asked who the admitting doctor was they told me it was Dr. Pleasant Pants that I had just seen. I was less than thrilled.
Once I was taken upstairs and settled into my room, a neurology doctor who I didn’t know showed up to see me. And AGAIN for the THIRD time in less than three hours, this doctor identifies herself and before I can say anything she says “I DO NOT GIVE NARCOTICS FOR MIGRAINES, JUST SO YOU KNOW.” Yet again I had never asked for an narcotics or even actually thought about asking for one. Like the two before her she was also making an assumption about why I was there and what I wanted before even seeing me. By this point in the day I had nothing to say I was so blown away that I just looked at her. I didn’t have anything to say I just agreed with her plan of care and went on with it. At that point I would have tried anything to get the headache to go away. And anything I would have said in that moment to this doctor would not have been nice or helped my case in any way.
Sadly, during my entire four day stay in the hospital there was only one nurse that would actually give me my home pain meds. In fact she actually brought them to me without me even having to ask for them. The other nurses didn’t think I needed them because I was getting “the migraine cocktail!” And that is true, I didn’t need my home meds for the headache, I needed them for the rest of my body. All the other parts that hurt besides my head.
I know, everyone is all in an uproar by the new changes that may be coming with narcotics and the doctors are being more careful with what they prescribe and to who. But anyone could look at my record if they really took the time and see that there is more than enough reason for one or even both of the medications I take. And if they looked more closely they would also see that my scripts last me on average 45 days rather than 30 because I don’t take them as often as they are prescribed. If they took time to look further than the med list they would see a person. A person who believe it or doesn’t really care for the way pain medicine makes me feel. I don’t enjoy being nauseated and itchy when I am already itchy all the time from my illness.
It just frustrates me to no end that the people in the world who have abused the drugs have totally messed things up for those of us who need them. Because people choose to take narcotics to get high it is becoming increasingly hard to get pain meds for people who really truly need them. Many of us need something to be able to get out of bed in the morning. Or to take a shower, or to do any daily task. But because of those idiots many are being refused. And sadly there have been a number of suicides in the chronic illness community due to the fact that they were refused the pain meds they relied on.
I have not shared this earlier because it took me awhile to process it. To really think about how it made me feel and how I could share this best to get my point across without sounding like I was whining. I just wish medical providers would look further than a med list. Or even the list of diagnoses. Behind those things there are people, people who never asked for these life altering diseases, people who didn’t ever do anything to deserve the fact that we are living in chronic pain. Many of us who really need the pain meds would not be able to function or have any semblance of a normal life. And if it comes to the point when none of us have access to those meds a lot of us wont be able to get out of bed, much less work and be a productive member of society. Many of us would gladly trade every last pain pill for the ability to go back to the life we had before we got sick. If i could turn in my pain meds and magically be healed i would be the first in line. Sadly, that doesn’t happen! I can’t speak for all of the people with chronic pain due to a chronic illness, but personally I have tried all other methods of pain relief. I have tried meditation, acupuncture, massage, physical therapy, water therapy, over the counter meds, pain rubs, heat, ice. You name it, I have probably tried and it just doesn’t work the same way that pain medicine does.
At this point the only thing I think we can really do is to start writing letters. Letters to those who represent us in our local, state and federal government. I am not a political person and I normally don’t include things like this in my blog but I think this is all we have left. I think its time for a CALL TO ACTION for all of us who suffer from chronic pain. We have to be proactive and start writing letters, telling our stories and getting them out there. If we don’t share them, who will ever know what we really live through on a daily basis. They need to know that we are being treated the same as drug seekers, the same as drug addicts or not being treated at all. They need to know that we didn’t choose this life but it has happened and we are doing out best to make the best out of the hand we were dealt and having out pain medications taken away is not the way to do it.
I know in the past people have probably assumed I was drug seeking because when you present to the ER, for a migraine or back pain or a lupus flare that causes pain all over the body they can’t see it. They don’t see our pain on a lab test or an X-ray so they just assume that we are just there for the meds. When it reality we just want to do whatever it takes to get the pain away even if that’s just a shot of steroid. Healthcare workers have sadly become so jaded by the “opioid crisis” that they can’t see past it. I know from many years of experience as a nurse that it is easy to assume that drug seeking is occurring when someone asks for pain medicine without asking any further questions. We have to start advocating for ourselves, as I always say if we don’t advocate for ourselves no one else will. Sadly, I did not do a good job of doing that this time around because I felt so bad. But I wont stand to be treated like this again.
I am lucky to have a multiple people who act as advocates for me for, will stand up and fight for me when I can’t. My Mom has become my biggest advocate as she has sat in the ER waiting rooms and at my bedside hours in end without complaint. Just to make sure that i get what I need. Many times she is my voice when I can’t speak up for myself. If you are in a situation where you don’t feel as though you can stand up for yourself take someone with you. If you can, take a family member or a friend with you to the ER or to the Dr to help make sure you get the treatment and care that you deserve.
Please take the time to also share this story in your communities. We have to get our stories out there, we have to find a way to be heard.
This post is graciously contributed by Amber from TheWorldSeesNormal.com.
Digging Deep accepts guest posts on many topics from a wide range of experts, patients, health care practitioners, and others who work with sick children and teens. We welcome your perspectives and stories to share regarding ways to support the emotional needs of children with health challenges and the families and professionals who support them. Please email: info@diggingdeep.com if you would like to be a guest blogger.
Ummmmm thought you wouldn’t take your “home pain meds because you know narcotics can cause rebound headaches “….but yet you were alas saved when they FINALLY gave you the narcotics you didn’t even mention or want! I don’t think you’re a regular drug seeker!!! I think you’re the atypical one! As patients go….the hardest addicts I see are those with some kind of chronic pain issue (real or feigned) that get hooked and run out of their Rxs early and are truly convinced that all those other people are ruining it for the rest of us!!! (Addicts that have an actual diagnosis….but are still nevertheless addicted and seeking) I got 2nd hand embarrassment reading this
Okay 1st of all! Even if they cause rebound headaches. You can’t stop taking it for other CHRONIC PAIN you’re experiencing. The steroids or whatever else they were treating her with helped with that. So now to worry about her regular pain. And that’s ASSUMING her headache was caused by rebound! It could be herniated disc headache & stress headache. A Neurological headache. UNFORTUNATELY a lot of Times you don’t know where headaches come from. Because Doctors are so smart! They can’t heal lupus or arthritis or migraines for that matter. And a host of other things. I’m pretty sure they wouldn’t have admired her for 4 days for phantom symptoms. You should be ashamed of yourself. What she said is 100% Valid. They should be looking at the overall patient. But the problem is all these doctors that had greed. And they gave out the medication to people who didn’t need it, and those people turned around and sold it across the country. And they didn’t care about anyone else but making money. Most of the people who’s going to pay management they don’t even take their medication they fucking sell it. So if someone is going into pain management looking for pain treatment, they probably actually need it. Especially with how rampant it was in the streets. Have you set an a pain management office, or pharmacy. Do you hear the way people talk. They don’t even take their medication. That was the problem. What’s the doctors who destroyed the country with their greed. And the pain sufferers who are truly in pain, get treated like pieces of trashcan. Where she was 100% valid is. She said they need to look at the overall patient. Patients need to start writing their congressman’s and their political leaders. She’s giving resolution to the people who are truly suffering, and becoming victims of being looked down upon.
It was doctors greed that destroyed the County. Giving it to drug dealers instead of actual pain Patients. Greed Greed Greed.
My sentiments exactly! Did she say she was a former nurse? Haha! Oh and, can we talk about chronic illness related to mental illness.
Wow..these drug addicts that you say are seeking drugs in the ER and getting high on purpose and ruining your access to pain meds and ruining your quality of care .
.first off addicts that have graduated to ER drug seeking are not taking drugs on purpose to get high there taking drugs to feel normal and temporarily postpone the he’ll of withdrawal…addiction is a disease that changes an addicts brain chemistry and drugs become like food, water,and air to an addict….but let me guess your one of those people that thinks addiction is a choice that the addict wants and chooses not to quite…I mean wow the way you are talking about addicts..u should have just called them junkie losers …and the way you were treated is what addicts go through all the time..but guess what?! Nobody ..not addicts or non addicts deserve to be treated that way…how about have some compassion for people that are struggling with addiction!
I have to agree with the original poster. Doctors and nurses need to look past the med list. I’m on a long term opioid due to a medical error of all things- and had an ER visit this week due to severe dehydration and kidney infection. I was sick and in pain. The first thing out of the docs mouth was “are you here for pain meds?” No! I’m here to be treated for my symptoms. But because she only saw the opioid on my chart I was given an oral zofran only. I really needed IV fluids, maybe some pain meds in the iv due to the nausea and vomiting. But since I got none of this I was sent home with continued nausea, vomiting, fever, pain and dehydration for the next 48 hours. I wanted to go back and get fluids but didn’t want to go through that kind of treatment again.