The Day I was Treated Like A Drug Seeker

* This is about my personal experience not a topic to be debated about the use of narcotics.

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 veins 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 or 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 won’t 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 deserve.

If you need any help writing letters to your representatives or finding who your representatives are please let me know and I will be more than happy to help you however I can

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.

With Love,

Amber

What’s In My Hospital Bag- Spoonie Edition

Sadly over the last three years I have spent many days and nights in the hospital. I even took a trip to Mayo for a week and have had a couple overnight trips for treatment. That being said I have what I need in my bag for the hospital down to a science. In fact when I get home from the hospital, I wash the dirty things in the bag and repack it. That way it’s always ready and I don’t have to rely on my family to try and pack it in a rush. So let’s just jump right into what’s in my hospital bag.

1. Pajamas/yoga pants- I always have at least one or two full sets of pajamas packed in my bag. Whether I am able to wear them or not I want to have them. And I generally have sets for summer and winter. Because you never know if you will be in a room with a roommate who keeps it at 60 or 80 degree. I also keep usually two sets of yoga type pants and a pair of shorts in the bag, in case I’m on a ward where I can’t wear anything but a gown. You just have to have bottoms on, no matter what kind. For me personally I don’t feel comfortable wearing only a gown.

2. T-shirts/Tank Tops- I always pack a T-shirt or two (usually short sleeved, maybe one long sleeve) & several tank tops in case they will let me wear them. Most of the time I am on a floor with a heart monitor so I have to wear a gown so they can reach it. But I always keep a couple just in case because to me they are much more comfortable than those darn hospital gowns.

3.Underwear & Bras – I will usually pack at least 6 days worth of underwear because that is the longest I have been in the hospital to date. As far as bras go if I think there is a possibility I will be admitted by my PCP, or that the ER will decide to admit me I will go in with a sports bra on! Then I generally try to pack 1-2 sports bras in my bag. That way I can change every couple days. Sadly, I have to wear a bra. It’s uncomfortable feeling for me not to and can be awkward for the nurses if I don’t!

4. Personal Care Items- I have a bag within my bag that keeps all of my personal care items in them. I always have deodorant, body soap, shampoo, lotion, toothpaste, toothbrush, and a hair brush!! I also keep some hair ties, and headbands in my bag as well so I don’t have to deal with my hair in my face.

5. Slippers or Flip-flops- This isn’t so much a comfort thing for me as much as a way to prevent walking on dirty hospital floor. Hospital/Hotel floors aren’t really known for being clean. So I never leave my bed without something on my feet. And most hospitals won’t let you walk in the room barefoot due to bare feet being a fall risk! I also always try to shower in flip flops! But obviously that’s just a preference for me, and may not be something you need on your list!

6. Entertainment – Most of the time when I’m in the hospital I am in with a Migraine. That being said the TV is often to loud and to bright for me. So I always have my phone, and usually my IPad. Because I have those things with me I always have chargers for both and earbuds. There is also usually a book in my bag in case I’m in with something besides a migraine and feel like reading.

7. Comfort- I’ve been in the hospital enough times to know that I will find little comfort in their beds. Because of that I always have my own pillow and a small fleece blanket to help me get more comfortable so I can rest more easily.

8. Miscellaneous Items- These are items I don’t always have with me for each admission, but are on my list for packing a bag. My CPAP generally doesn’t come with me. But if you are in a hospital the expects you to, you should make sure that it is on your list of items to take. This may seem funny but I HATE wearing socks. So I generally keep a pair or two in my bag just in case I have a roommate that keeps the trim like an iceberg! A pair of cheap sunglasses are almost always in my purse or my hospital bag. This is because I generally end up in the hospital with a migraine. And I’m very light sensitive. So I try to always keep a pair in my bag. The last thing I keep in my bag is an old Walmart bag or unused trash bag, to put my dirty clothes in. Finally, one of the most important things I MUST have is an eye mask!

These are only items that I pack for me. Obvious everyone is going to have a different list for themselves. While preparing to write this I polled my friends who also have recently spent time in the hospital for their must haves. This is their list.

9. My fellow spoonies MUST haves: chapstick, Makeup wipes, fill-it-in book, crossword puzzle books, ink pen, maxi pads/tampons (just in case it sneaks up on you while you are in the hospital), cottonel wipes, cup for dentures, glasses and glasses case, contact solution and case if you wear contacts, coloring book and something to color with, a heating pad or rice bag that can be heated up. One friend also said if she is feeling like eating she will sometimes pack some snacks that won’t need to be refrigerated.

I hope my sharing this list will help you to figure out what you need in your bag. Even if you don’t keep one packed I would highly make a list of the things you would put in your bag should you need one. If you do choose to take some comfort items from home it will make you feel a little less like you are in a sterile environment. Having a list will also make it easier for your family if they should ever have to pack a bag for you. To be honest that was a big reason why I started keeping a bag always packed. It was just to difficult to tell my family exactly where things were that I wanted. And this way the don’t have to be digging through my stuff!! That being said, packing a bag or making a list of what you would want in said bag, will make being admitted much less stressful or scary in the future!

With Love,

Amber

Special Thanks to Missy and Christall for sharing your personal lists with me!!